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Breast Cancer Signs & Symptoms

Breast cancer is the most common cancer in women of all races. According to the 2019 National Cancer Registry (NCR), the lifetime risk in South Africa is 1 in 27. Men do get breast cancer however, it is rare and accounts for only 1% of all breast cancers. It is a hundred times more common in women than in men.

The risk for breast cancer increases as women grow older, but many women under 40 are diagnosed with breast cancer. All women are at risk, and in particular women with a family history of breast cancer. Other factors that increase risk are: being overweight, being inactive, consuming alcohol, poor dietary habits, smoking and exposure to chemicals.

Early detection can lead to effective treatment and a positive prognosis.
Regular self-breast examination and regular mammograms are key to early detection.
Presenting yourself early for treatment may result in more effective treatment, leading to a reduction in pain and suffering and a significant decrease in the loss of life.

Breast pain (mastalgia) is common and accounts for 45-70% of breast-related healthcare visits. To experience occasional breast pain is common, however, breasts don`t typically hurt. There are various causes of breast pain, also known as mastalgia – which is categorised as cyclical or non-cyclical. The 2 most common factors of breast pain are hormone fluctuation (puberty, pregnancy and menopause) and fibrocystic (lumpy) breasts. Other causes of breast pain also include breastfeeding, unhealthy diet, large breast size, a poorly fitted bra, pain from scar tissue after breast surgery, medications for heart disease antibiotics, antidepressants, hormone therapy, and an increase of epinephrine levels in the breast tissue due to smoking. Sometimes breast pain is caused by irritation of the chest, arms, or back muscles; which is common if you’ve participated in physical activities like raking, rowing, shoveling, and waterskiing. 

Breast Self-Examinations (BSE)

The Cancer Association of South Africa (CANSA) advocates that every woman should do monthly breast self-examinations (BSE) – at the same time every month 7-10 days following her menstrual cycle from age 20 – and to report any changes or concerns to a doctor or professional nurse practitioner without delay.

Regular monthly BSE should be seen as a method to raise awareness of breast cancer and taking responsibility for one’s own breast health rather than as a screening method for breast cancer.

Symptoms and Signs of Breast Cancer in Women

The following are changes that could occur due to breast cancer:

◾ A lump or thickening in an area of the breast.
◾ A change in the shape of the nipple, particularly if it turns in, sinks into the breast, or has an irregular shape.
◾ A blood-stained discharge from the nipple.
◾ A rash on a nipple or surrounding area.
◾ A swelling or lump in the armpit.
◾ Nipple tenderness or a lump or thickening in or near the breast or underarm area.
◾ A change in the skin texture or an enlargement of pores in the skin of the breast (some describe this as similar to an orange peel’s texture).
◾ Any unexplained change in the size or shape of the breast.
◾ Dimpling anywhere on the breast.
◾ Unexplained swelling of the breast (especially if on one side only).
◾ Unexplained shrinkage of the breast (especially if on one side only).
◾ Recent asymmetry of the breasts (Although it is common for women to have one breast that is slightly larger than the other, if the onset of asymmetry is recent, it should be checked).
◾ Nipple that is turned slightly inward or inverted.
◾ Skin of the breast, areola, or nipple that becomes scaly, red, or swollen or may have ridges or pitting resembling the skin of an orange.

These signs do not necessarily mean cancer. As many as 90% of breast masses are not cancerous. Inverted nipples, blood stained nipple discharge or a rash can all be due to other medical conditions. In the event of any changes to what is normal, one should consult a health professional. It is most likely to be a benign condition that can easily be treated. The health professional will refer you to a breast health clinic or medical specialist where the staff can provide reassurance or provide any necessary treatment.

Image Source: CANSA

CANSA, advocates a mammogram every year for all women from age 40 for purposes of non-symptomatic breast screening. CANSA further advocates that:

1. Women who are at risk and those that have had breast health problems in the past should consult their respective health professional to determine a schedule applicable to them.
2. Every woman with a close female relative diagnosed with breast cancer, should go for a mammogram 10 years earlier than the age at which the close relative was diagnosed with breast cancer.
3. Women aged 40 to 54 should have an annual mammogram.
4. Women 55 years and older should change to having a mammogram every 2 years – or have the choice to continue with an annual mammogram.
5. Screening should continue as long as a woman is in good health and is expected to live 10 years or longer.
6. Every woman should be informed of the known benefits, limitations, and potential harms linked to breast cancer screening by means of a mammogram.

Sources: https://cansa.org.za/breast-cancer/, https://cansa.org.za/men-and-breast-cancer/, https://cansa.org.za/files/2022/02/CANSA-Fact-Sheet-on-Breast-Cancer-in-Women-NCR-2019-web-January-2022.pdf, https://www.who.int/news-room/fact-sheets/detail/breast-cancer, https://www.gov.za/BreastCancerAwarenessMonth2022.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.


October is Breast Cancer Awareness Month

October is Breast Cancer Awareness Month, an annual campaign to raise awareness about the impact of breast cancer. The Pink Month is when extra efforts are made to educate those concerned about the disease, including the early signs and symptoms associated with breast cancer.

Celebrate all the Survivors, encourage the Fighters and honour the Taken

We all know that one amazing woman. It might be your mother, sister, dear friend or even a colleague – a woman that you admire for her strength and courage, her faith and fighting spirit, or it might be someone who left her footprints in your heart after she lost her fight against breast cancer. Let`s show our Love and Support to ALL the brave ladies by wearing pink in October for Breast Cancer Awareness Month!

For October we have added some new merchandise to our catalog. Every item sold means there are more proceeds that can be donated towards the medical care, treatment, therapies and emergency surgeries of all our AOM children who desperately need funds on an ongoing basis. Your support truly goes a long way!


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September is Childhood Cancer Awareness Month – Warning Signs and Types of Childhood Cancer

In South Africa, an average of 800 to 1000 children are newly diagnosed with cancer each year. Childhood cancers share general symptoms with other illnesses; knowing the warning signs can be vital in early detection and treatment.

It is important to know that cancer in children tend to be different from cancers in adults. The majority of them occur in the developing cells like blood, bone marrow, the kidneys and tissues of the nervous system.  The CANSA Childhood Cancer Awareness Programme aims to educate the public on the early warning signs. In South Africa, the St Siluan Warning Signs for Childhood Cancer are used.

St Siluan Warning Signs Childhood Cancer:

  • S – Seek medical help early for ongoing symptoms
  • I – White spot in the eye, new squint, sudden blindness or bulging eyeball
  • L – Lump on the stomach, pelvis, head, arms, legs, testicle or glands
  • U – Unexplained fever present for over two weeks, weight loss, fatigue, pale appearance, easy bruising & bleeding
  • A – Aching bones, joints, back and easy fractures
  • N – Neurological signs, a change in walk, balance or speech, regression, continuous headaches with / without vomiting & enlarged head

Types of Childhood Cancer

According to the recent South African Children’s Cancer Study Group (SACCSG) registry statistics, for 2009 to 2013, the five foremost types of childhood cancers in South Africa are:

Leukaemia
Lymphoma (tumours that begin in the lymph glands)
Brain tumours
Nephroblastomas or Wilms tumours – cancer of the kidneys
Soft tissue sarcomas (tumours that begin in the connective tissue)

Should you have any concerns about your child showing symptoms, you are advised by CANSA to seek medical help immediately. Click for fact sheets on all types of childhood cancer.

Info-graphic © CANSA.

Source: The Cancer Association of South Africa – www.cansa.org.za

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August is SMA Awareness Month

Spinal muscular atrophy (SMA) is a rare genetic disease that makes the muscles weaker and causes problems with movement. Individuals with SMA have difficulty performing basic functions of life, like breathing and swallowing. They also have difficulty sitting up straight, crawling and walking. Other symptoms include weak arms and legs, muscle tremors, and joint and bone problems. This condition gets worse over time, but there are treatments available to help manage the symptoms. It is important to note that SMA does not affect a person’s ability to think, to learn, or to build relationships.

“SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Individuals with SMA don’t produce survival motor neuron (SMN) protein at high enough levels. Without this protein, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.” – curesma.org

Four primary types of SMA, based on the age of onset:

SMA Type 1 (Infantile-onset SMA or Werdnig-Hoffman Disease):
This is the most severe kind of SMA and strikes infants within the first 6 months of life. Some children with SMA type 1 will die before their second birthday, but aggressive therapy is improving the outlook for these children.

SMA Type 2 (Intermediate SMA):
When a child develops spinal muscular atrophy between six and 18 months, the condition is classified as type 2. The child may be able to sit up, but respiratory challenges can shorten their lives as the disease progresses.

SMA Type 3 (Juvenile SMA, Kugelberg Welander Syndrome):
Type 3 SMA emerges in children 18 months old or older and can become evident as late as in the teenage years. Muscle weakness is present, but most patients can walk and stand for limited periods, particularly early in the course of the illness.

SMA Type 4 (Adult SMA):
In some people, SMA develops in adulthood. Type 4 SMA is rarely severe enough to have impact on the patient’s lifespan.

SMA not linked to chromosome 5:
Some forms of SMA are not due to SMN1 gene mutations and SMN protein deficiency. These forms, including Kennedy’s disease, vary in severity, and some may involve muscles farther away from the center of the body than those associated with SMA types 1 through 4.

hopkinsmedicine.org

There is currently no cure for SMA and no medications for treatment. Symptoms are managed to improve quality of life which may include the use of a wheelchair, braces, and other support devices; assistance with ventilation; physical- and occupational therapy as well as rehabilitation.

For a more information about SMA, diagnosis, treatments please visit the following article sources:
www.nhs.uk, hopkinsmedicine.org, curesma.org, signsofsma.com.


August is SMA Awareness Month!

Wearing an Awareness Bracelet creates an opportunity to start a conversation and share information about a particular cause or disease. One conversation can have ripple effects and may ultimately improve early diagnosis, access to services, increase funding for research, and help reduce feelings of isolation as well as discrimination that so many individuals with rare diseases and special needs face on a daily basis.

Shop SMA Awareness Bracelets Online

SMA Awareness Bracelets © Arms of Mercy NPC
SMA Awareness Bracelets

Kerry Walsh
Kerry Walsh

Raising SMA Awareness with Kerry Walsh

My name is Kerry Walsh, I was born on the 22nd of October 1997 in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. I was taken to the doctor where I was diagnosed with low muscle tone. We tried months of physical therapy but unfortunately, there was no improvement. I was then sent for a muscle biopsy in my neck. They discovered that I had SMA (Spinal Muscular Atrophy). I was given the life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had… Continue reading.


*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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Celebrate Life – National Cancer Survivors Day – 5 June 2022

On the first Sunday in June (the 5th of June 2022), people from around the world will come together to celebrate life and the 35th annual National Cancer Survivors Day! Cancer survivors Day is a day to support, honour and celebrate all cancer survivors, those who have recently been diagnosed, and everyone who has been affected by cancer.

National Cancer Survivors Day aims to raise awareness of the ongoing challenges that cancer survivors face and it champions more research, resources, and legislation to improve their quality of life. Events for the day include meetings of survivors, bake sales, sponsored events, social events, and much more, any fun and social way of fundraising and awareness raising is possible. Organize an event!

Awareness and Support
Cancer survivors should be celebrated and honoured each day! Show your support by ordering and proudly wearing your Arms of Mercy cancer awareness bracelet, t-shirt, necklace or brooch!

One conversation can have ripple effects and may ultimately improve early diagnosis, access to services, increase funding for research, and help reduce feelings of isolation as well as discrimination that so many individuals with cancer face on a daily basis.

Awareness offers hope, and can to lead to more action! Wear yours in memory of a loved one lost,  or gift one to someone close to your heart.

View all cancer awareness products in the shop

Make a donation at GivenGain or start a fundraising campaign in aid of Arms of Mercy. You can raise funds as an individual and also as a team! Did you know that on average, a personal fundraising project on GivenGain raises $600? With only 20 fundraising supporters Arms of Mercy could crowd-fund $12,000 ( that`s roughly R168938!).

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May is Prader-Willi Syndrome Awareness Month

May is Prader-Willi Syndrome Awareness Month

Prader-Willi Syndrome (PWS) is a rare genetic multisystem neurodevelopmental disorder that affects a part of the brain called the hypothalamus. The hypothalamus is a gland in your brain which is responsible for regulation of all the systems in the body and control of hunger and thirst, temperature regulation, pain and stimulation hormone production amongst others. The disorder results in a number of physical, mental and behavioral problems.

PWS is caused by a lack of active genetic material in a specific region of chromosome 15 (15q11-q13). Individuals normally inherit one copy of chromosome 15 from their mother and another one from their father. The genes in the PWS region are normally only active on the chromosome that came from the father. There are 3 main molecular mechanisms that result in PWS: paternal deletion, maternal UPD 15, and imprinting defects.

A clear explanation of PWS symptoms, causes, diagnosis, genetics, treatments & research can be found on the Foundation for Prader-Willi Syndrome Research website. Watch the video below for a brief overview.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart, and Heinrich Willi in 1956, based on the clinical characteristics of 9 children they examined. The common characteristics defined in the initial report included small hands and feet, small stature, very low lean body mass, early-onset childhood obesity, weak muscles at birth, insatiable hunger, extreme obesity, and intellectual disability.

PWS occurs in approximately 1 in 15,000 births. It affects both females and males of all races and ethnicities with equal frequency. Symptoms and severity may vary from one person to another. The symptoms also change over time in individuals with PWS, and a detailed understanding of the nutritional stages of PWS has been published. 

PWS is recognized as the most common genetic cause of life-threatening childhood obesity. There is no cure for Prader-Willi syndrome but many patients will benefit from a supervised diet, and some symptoms can be treated with hormone therapy. Other treatments include feeding therapy, physical therapy, occupational therapy, strict food supervision, exercise program, and counseling. Scientists are actively studying the normal role of the genetic sequences in the PWS region and how their loss affects the hypothalamus and other systems in the body.

Milan Dale

May is Prader-Willi Syndrome Awareness Month

Individuals, families, communities, schools and workplaces, various organisations, Associations and Foundations around the globe come together in May to raise awareness of Prader-Willi Syndrome, and also to raise funds to provide support and fund important research into this complex and life-threatening condition. The official awareness colour for Prader-Willi Syndrome is ORANGE as it had been previously used as the awareness colour for hunger.

Display your support by wearing orange in May and help raise awareness for PWS!

Sources: rarediseases.org, fpwr.org, pwsavic.org.au, webmd.com, wikipedia.org.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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What is Cystic Fibrosis?

Cystic Fibrosis

Cystic Fibrosis (CF) is an inherited life-threatening disorder that damages the lungs. It is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It also causes severe damage to the digestive system and other organs in the body. CF hinders the release of digestive enzymes from the pancreas, which triggers malnutrition and causes lung disease that is eventually fatal and produces high levels of salt in sweat that can be life-threatening.

CF is characterized by abnormalities affecting certain glands (exocrine) of the body, especially those that produce mucus. Saliva and sweat glands may also be affected. Exocrine glands secrete substances through ducts, either internally (e.g., glands in the lungs) or externally (e.g., sweat glands). In CF, these secretions become abnormally thick and can clog up vital areas of the body causing inflammation, obstruction and infection.

Cystic Fibrosis
Figure A shows the organs that cystic fibrosis can affect. Figure B shows a cross-section of a normal airway. Figure C shows an airway with cystic fibrosis. The widened airway is blocked by thick, sticky mucus that contains blood and bacteria. Source: National Heart Lung and Blood Institute (NIH).

Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts and passageways. See how the lungs work normally and how cystic fibrosis can affect the lungs over time in this video by the Cystic Fibrosis Foundation.

CF is a complex disease. The types of symptoms and the severity can differ widely from one person to the other. Many different factors can affect a person’s health and the course the disease runs, including the person`s age at the time of diagnosis. While the majority of people are diagnosed with CF by the age of 2, some are diagnosed as adults.

Symptoms of Cystic fibrosis can include the following:

  • Persistent coughing, at times with phlegm
  • Frequent lung infections including pneumonia or bronchitis
  • Shortness of breath / Wheezing 
  • Chronic sinus infections
  • Nasal polyps
  • Very salty-tasting skin
  • Poor growth or weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Clubbing or enlargement of the fingertips and toes
  • Rectal prolapse
  • Male infertility

The disorder was first recognized in as a specific disease by Dorothy Andersen in 1938, with descriptions that fit the condition occurring at least as far back as 1595. The name “cystic fibrosis” refers to the characteristic fibrosis and cysts that form within the pancreas.

Although technically a rare disease, CF is ranked as one of the most widespread life-shortening genetic diseases. It is most common among nations in the Western world, and occurs predominantly among Caucasians – about one in 40 carry the so-called F508del mutation. Two copies of the mutation, one inherited from the mother and the other from the father, cause the disease, while inheriting just a single copy cause no symptoms, and makes the person a “carrier.”

While significant progress has been made in treating the disease, there is still no cure. Treatment depends upon the stage of the disease and the specific organs that are involved. Treatment is geared toward reducing the thickness and amount of mucus in the airways, preventing infections, preventing blockage of the intestines and ensuring the proper intake of vitamins and nutrients.

May is Cystic Fibrosis Awareness Month – CF Genes Day 2022

The South Africa Cystic Fibrosis Association (SACFA) is a Non-Profit Organisation, and as such is the primary cystic fibrosis support group and driver of advocacy for the treatment of cystic fibrosis in South Africa. Their objectives include communicating with the CF community, raising public awareness and promoting medical advancements. Fundraising is essential to sustain these objectives.

Join CF Genes Day on 25 May 2022! This event aims to create public awareness of cystic fibrosis in South Africa and helps raise funds for necessary medical equipment. In order to take part, each person needs to have a sticker and wear jeans. Individuals, groups, schools, and companies are encouraged to get involved, the proceeds raised will be used to purchase medical equipment and help spread awareness of Cystic Fibrosis in South Africa. See details here.

Sources: www.cff.org, rarediseases.org, wikipedia.org, theconversation.com, sacfa.org.za.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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What is Mowat-Wilson Syndrome?

mowat-wilson syndrome

Mowat-Wilson Syndrome (MWS) is a rare genetic disorder that may be apparent at birth or later in childhood. It is caused by an abnormality in the ZEB2 gene that is usually the result of a new genetic change (mutation) in the affected person. MWS almost always occurs as a new mutation. This means that in nearly all cases, the gene mutation has occurred at the time of formation of the egg or sperm for that child only, and no other member of the family will be affected. It is usually not inherited from, or “carried” by, a healthy parent. In a very small number of families, more than one child has been affected with MWS.

One rare finding is lack of a spleen, an organ that helps to fight certain types of infections. All individuals with MWS should be checked at the time of diagnosis to see if they have a spleen. This can be done through an ultrasound of the abdomen. Blood testing can sometimes also suggest that the spleen is absent.

MWS affects both males and females, and is estimated to occur in 1 in 50,000-100,000 births. MWS has been described in many different countries and ethnic groups worldwide.

MWS is characterized by distinctive facial features, intellectual disability, and seizures. Other congenital anomalies do occur in some individuals and can include a gastrointestinal disease known as Hirschsprung disease (40-50% of individuals) in which a narrowing of a portion of the colon is present, heart defects, eye defects, kidney abnormalities, male genital abnormalities, short stature, and absence of the area of the brain which connects the two cerebral hemispheres (agenesis of the corpus callosum).

Mowat-Wilson Syndrome, clinical features of Patient 1 at age: (A) 1 year and 6 months; (B-C) 5 years; (D-E) 13 years and 8 months; (F-G) 18 years. Source: Garavelli L et al, CC BY 2.0, via Wikimedia Commons

Children with MWS have a square-shaped face with widely spaced and deep-set eyes. They also have a broad nasal bridge with a rounded nasal tip; a prominent and pointed chin; large, flaring eyebrows; and uplifted earlobes with a dimple in the middle. These facial features become more distinctive with age. Adults with MWS have an elongated face with heavy eyebrows and a pronounced chin and jaw. Affected people tend to have a smiling, open-mouthed expression, and they typically have friendly and happy personalities.

Less commonly, this condition also affects the eyes, teeth, hands, and skin coloring (pigmentation). Although many different medical issues have been associated with MWS, not every individual has all of the features.

MWS is often associated with an unusually small head (microcephaly), structural brain abnormalities, and intellectual disability ranging from moderate to severe. Speech is absent or severely impaired, and affected people may learn to speak only a few words. Many people with this condition can understand others’ speech, however, and some use sign language to communicate. If speech develops, it is delayed until mid-childhood or later. Children with MWS also have delayed development of motor skills such as sitting, standing, and walking.

There is no cure for this syndrome. Treatment is supportive and symptomatic. All children with Mowat–Wilson syndrome required early intervention with speech therapy, occupational therapy and physical therapy

Mowat-Wilson Syndrome Awareness Bracelet © Arms of Mercy NPC
Mowat-Wilson Syndrome Awareness Bracelet

Sources: rarediseases.org, mowat-wilson.org , medlineplus.gov, wikipedia.org.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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23 February – Noonan Syndrome Awareness Day

noonan syndrome awareness day

February is Noonan Syndrome Awareness Month, and 23 February is Noonan Syndrome Awareness Day.

Wearing an Awareness Bracelet creates an opportunity to start a conversation and share information about a particular cause or disease. One conversation can have ripple effects and may ultimately improve early diagnosis, access to services, increase funding for research, and help reduce feelings of isolation as well as discrimination that so many individuals with rare diseases face on a daily basis. Shop Noonan Syndrome Awareness Bracelets.

Noonan Syndrome Awareness Bracelets © Arms of Mercy NPC
Noonan Syndrome Awareness Bracelets

What is Noonan Syndrome?

Noonan syndrome (NS) is a variably expressed, multi-system genetic disorder that is present in about 1 in 1,000 – 2,500 births. People with NS may experience bleeding issues, congenital heart defects including hypertrophic cardiomyopathy and/or pulmonary valve stenosis, lymphatic abnormalities, small stature/growth issues, feeding and gastrointestinal issues, failure to thrive, hypertelorism, learning disorders, autism, unexplained chronic pain, chiari malformation, hypotonia, ptosis, skeletal malformations, laryngomalacia, tracheomalacia, opthamology issues, orthopaedic issues, oncology issues and much, much more. Because of the variability in presentation and the need for multidisciplinary care, it is essential that the condition be identified and managed comprehensively.

NS is caused by a genetic mutation and is acquired when a child inherits a copy of an affected gene from a parent (dominant inheritance). In many individuals who have NS, the altered gene happens for the first time in them, and neither of the parents has Noonan syndrome (this is called a de novo mutation). Because some cases of NS occur spontaneously, there is no known way to prevent it. NS can be detected with molecular genetic testing.

Management of Noonan syndrome focuses on controlling the disorder’s symptoms and complications.

The signs and symptoms of Noonan Syndrome vary greatly in range and severity from person to person. Characteristics may be related to the specific gene containing the mutation.

Symptoms of Noonan Syndrome

The symptoms of Noonan syndrome may include the following:

A characteristic facial appearance:
The Head may appear large with a prominent forehead and a low hairline at the back of the head.
Facial features may appear coarse, but appear sharper with age. The face may appear droopy and expressionless.
Eyes are wide-set and down-slanting with droopy lids. Irises are pale blue or green.
Ears are low-set and rotated backward.
The Nose is depressed at the top, with a wide base and bulbous tip.
The Mouth has a deep groove between the nose and mouth and wide peaks in the upper lip. The crease that runs from the edge of the nose to the corner of the mouth becomes deeply grooved with age. Teeth may be crooked, the inside roof of the mouth (palate) may be highly arched and the lower jaw may be small.
Skin may appear thin and transparent with age.

Approximately 50% – 70% of those with NS have short stature.
Feeding issues.
Musculoskeletal issues.
Breathing issues.

Heart defect present at birth (congenital heart defect).
A broad or webbed neck.
Minor eye problems such as strabismus in up to 95 percent of individuals.
Bleeding problems such as a history of abnormal bleeding or bruising.
Developmental delay of varying degrees, but usually mild.
Genital and kidney conditions.
Learning disabilities.
Hearing problems.
Lymphatic conditions.
Skin conditions.

Learn more about symptoms, causes, complications.

Treatment

Treatment is based on the individual`s particular symptoms.

  • Heart problems are followed on a regular basis, and are treated in the same way as they are for those in the general population.
  • Bleeding problems may have a variety of causes and are treated accordingly.
  • Growth problems may be treated with growth hormone treatment.
  • Early intervention programs are used to help with developmental disabilities, when present.
Description: A 12-year-old female with Noonan Syndrome. Typical webbed neck. Double structural curve with rib deformity.
By Konstantinos C Soultanis, Alexandros H Payatakes, Vasilios T Chouliaras, Georgios C Mandellos, Nikolaos E Pyrovolou, Fani M Pliarchopoulou and Panayotis N Soucacos – Rare causes of scoliosis and spine deformity: experience and particular features, CC BY 2.0, commons.wikimedia.org

Watch: A Conversation with Dr. Bruce Gelb, Director of the Mindich Child Health and Development Institute at Mt. Sinai Hospital. An expert in Noonan syndrome, Dr. Gelb has studied the genetic origins of this disease to understand its pathogenesis. Noonan and related syndromes result from mutations in several genes that encode proteins that cells use to signal from the outer membrane to the nucleus. Dr. Gelb and colleagues examine whether stem cells generated from cultured skin cells malfunction, leading to developmental disorders, and whether it is possible to coax cellular development to function normally.


Sources: teamnoonan.org , rarediseases.org , mayoclinic.org , genome.gov.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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7–11 February 2022 – Feeding Tube Awareness Week

The mission of Feeding Tube Awareness Week is to promote the positive benefits of feeding tubes as life-saving medical interventions. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding. Feeding Tube Awareness Week® connects families, by showing how many other families are going through similar things, and making people feel less alone.  

The beginning of February was selected because of it’s proximity to Valentine’s Day since we love our tubes. It can be challenging to have a lot of negativity surrounding the medical device that is keeping you, your child, or your loved one alive. This week, in particular, is an opportunity to embrace the positives and be thankful that it helps people to live, grow and thrive.

feedingtubeawarenessweek.org

A feeding tube is a medical device that is used to provide nutrition to people who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation. Placement may be temporary for the treatment of acute conditions or lifelong in the case of chronic disabilities.

There are dozens of conditions that may require tube feeding. The more common conditions that necessitate feeding tubes include prematurity, malnutrition, neurologic and neuromuscular disorders, inability to swallow, anatomical and post-surgical malformations of the mouth and esophagus, cancer, Sanfilippo syndrome, and digestive disorders.

A feeding tube can help you maintain adequate nutrition when an advanced gastrointestinal condition makes it difficult to take food by mouth. This can happen when you have:

Crohn’s disease (in severe cases)
Gastrointestinal cancer
Gastrointestinal complications due to trauma
Intestinal failure
Bowel obstruction
Microscopic colitis
Narrowing in your esophagus or digestive tract (stricture)
Short bowel syndrome
Ulcerative colitis

Feeding tubes are used widely in children with excellent success for a wide variety of conditions. Some children use them temporarily until they are able to eat on their own, while other children require them longterm. Some children only use feeding tubes to supplement their oral diet, while others rely on them exclusively.

The most common types of tubes include those placed through the nose, including nasogastric, nasoduodenal, and nasojejunal tubes, and those placed directly into the abdomen, such as a gastrostomy, gastrojejunostomy, or jejunostomy feeding tube.

Enteral nutrition is liquid nutrition that is delivered directly into the stomach or small intestine via a feeding tube. Enteral nutrition is recommended when a person cannot take in enough nutrition by mouth or if there is a medical problem involving the upper gastrointestinal tract.

Visit the Oley Foundation for more tools and resources on tube feeding and nutrition.


Sources: feedingtubeawarenessweek.org , wikipedia.org , nutritionnews.abbott , oley.org , stanfordhealthcare.org.

*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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4 February – World Cancer Day

world cancer day

World Cancer Day (WCD) is held annually on the 4th of February. While we live in a time of amazing advancements in cancer prevention, diagnosis and treatment, many of those who seek cancer care face obstacles around every corner. 

WCD aims to raise awareness and to re-imagine a world where millions of preventable cancer deaths are saved, and access to life-saving treatment and care that does not differ in quality according to the patient`s age, gender, geographical location, cultural background, ethnicity, religion, income, sexual orientation, disability, lifestyle or socioeconomic status. 

This year’s World Cancer Day’s theme, “Close the Care Gap”, is all about raising awareness of this equity gap that affects almost everyone, in high as well as low- and middle-income countries, and is costing lives.

Did you know?
10 million people die from cancer every year, that is more than HIV/AIDS, malaria and tuberculosis combined!
Experts project cancer deaths to rise to 13 million by 2030 – if we don’t act now.

Why take action?
More than a third of cancer cases CAN be prevented, and another third can be cured if detected early, and treated properly. It is the year 2022, and we know more about cancer today than ever before! Through investing in research and innovation; extraordinary breakthroughs in medicine, diagnostics, and scientific knowledge have happened, and the more we know, the more progress can be made to reduce risk factors, increase prevention and to improve cancer diagnosis, treatment, and care.

By implementing resource-appropriate strategies on prevention, early detection and treatment – millions of lives can be saved every year!

Since its creation in 2000, World Cancer Day has grown into a positive movement.
Every year, hundreds of activities and events take place all around the globe, gathering communities, organisations and individuals in schools, businesses, hospitals, marketplaces, parks, community halls, places of worship – in the streets and online. Check out the Map of Activities!

What is Cancer?

Cancer is a disease which occurs when changes in a group of normal cells within the body lead to uncontrolled, abnormal growth forming a lump called a tumour; this is true of all cancers except leukaemia (cancer of the blood). If left untreated, tumours can grow and spread into the surrounding normal tissue, or to other parts of the body via the bloodstream and lymphatic systems, and can affect the digestive, nervous and circulatory systems or release hormones that may affect body function.

Cancer tumours can be divided into three groups:
1. benign (slow-growing, not cancerous and rarely threaten life),
2. malignant (faster growing than benign tumours and have the ability to spread and destroy neighbouring tissue),
3. precancerous (the condition involving abnormal cells which may (or is likely to) develop into cancer).

Cancer is classified according to the type of cell it starts from. There are five main types:

1. Carcinoma – A cancer that arises from the epithelial cells (the lining of cells that helps protect or enclose organs). Carcinomas may invade the surrounding tissues and organs and metastasise to the lymph nodes and other areas of the body. The most common forms of cancer in this group are breast, prostate, lung and colon cancer

2. Sarcoma – A type of malignant tumour of the bone or soft tissue (fat, muscle, blood vessels, nerves and other connective tissues that support and surround organs). The most common forms of sarcoma are leiomyosarcoma, liposarcoma and osteosarcoma

3. Lymphoma and Myeloma – Lymphoma and Myeloma are cancers that begin in the cells of the immune system. Lymphoma is a cancer of the lymphatic system, which runs all through the body, and can therefore occur anywhere. Myeloma (or multiple myeloma) starts in the plasma cells, a type of white blood cell that produces antibodies to help fight infection. This cancer can affect the cell’s ability to produce antibodies effectively

4. Leukaemia – Leukaemia is a cancer of the white blood cells and bone marrow, the tissue that forms blood cells. There are several subtypes; common are lymphocytic leukaemia and chronic lymphocytic leukaemia

5. Brain and spinal cord cancers – these are known as central nervous system cancers. Some are benign while others can grow and spread.

Causes of Cancer

Cancers can be caused by a number of different factors and, as with many other illnesses, most cancers are the result of exposure to a number of different causal factors. It is important to remember that, while some factors cannot be modified, around one third of cancer cases can be prevented by reducing behavioural and dietary risks.

Modifiable risk factors: Alcohol, Being overweight or obese, Diet and nutrition, Physical activity, Tobacco, Ionising radiation, Workplace hazards (asbestos, chemical industry), Infections.

Non-Modifiable risk factors: Age, Carcinogens, Genetics, Immune System.

Types of cancers

With so many different types of cancers, the symptoms are varied and depend on where the disease is located. However, there are some key signs and symptoms to look out for, including:

Unusual lumps or swelling – cancerous lumps are often painless and may increase in size as the cancer progresses.

Coughing, breathlessness or difficulty swallowing – be aware of persistent coughing episodes, breathlessness or difficulty swallowing.

Changes in bowel habit – such as constipation and diarrhoea and/or blood found in the stools.

Unexpected bleeding – includes bleeding from the vagina, anal passage, or blood found in stools, in urine or when coughing.

Unexplained weight loss – a large amount of unexplained and unintentional weight loss over a short period of time (a couple of months).

Fatigue – which shows itself as extreme tiredness and a severe lack of energy. If fatigue is due to cancer, individuals normally also have other symptoms.

Pain or ache – includes unexplained or ongoing pain, or pain that comes and goes.

New mole or changes to a mole – look for changes in size, shape, or colour and if it becomes crusty or bleeds or oozes.

Complications with urinating – includes needing to urinate urgently, more frequently, or being unable to go when you need to or experiencing pain while urinating.

Unusual breast changes – look for changes in size, shape or feel, skin changes and pain.

Appetite loss – feeling less hungry than usual for a prolonged period of time.

A sore or ulcer that won’t heal – including a spot, sore wound or mouth ulcer.

Heartburn or indigestion – persistent or painful heartburn or indigestion.

Heavy night sweats – be aware of very heavy, drenching night sweats.

Please visit the official World Cancer Day website to find out more about different types of cancers, prevention, early detection and cancer treatment.


Source: www.worldcancerday.org


From the Shop

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28 February – Rare Disease Day

www.rarediseaseday.org

Rare Disease Day is observed every year on the 28th of February (or 29th in leap years, the rarest day of the year). The Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners, to provide an energy and focal point that enables rare diseases advocacy work to progress on local, national and international levels. Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity (just and fair inclusion) in social opportunity, healthcare, and access to diagnosis and therapies for those who are living with a rare disease.

A disease is considered “rare” when it affects fewer than 1 in 2000 people.

There are more than 7,000 rare diseases, of which approximately 95% have no treatment.

Rare diseases are present across the medical spectrum. Some are widely recognized by name, such as cystic fibrosis, while others are less known, such as cat eye syndrome. Most cancers (all but a few types) are rare. There are rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, and other body organs and systems.

Some of the problems people with rare diseases experience:
• Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping or halting the progression of a disease),
• Limited treatment options,
• Little or no research being done on the disease,
• Difficulty finding physicians or treatment centers with experience for a particular disease,
• Paying for treatments that are generally more expensive than those for common diseases,
• Reimbursement issues related to private insurance, Medicare, and Medicaid,
• Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease,
• Feelings of isolation and of having been abandoned or “orphaned” by the health care system.

Rare Disease Day raises awareness for the 300 million people currently living with rare disease around the world who require immediate and urgent attention, and their families and carers.

Visit the official Rare Disease Day website to learn more and to see events happening near you.

Sources: www.rarediseaseday.org. ; Rare Disease Day FAQ 2019.


Rare Disease Awareness Bracelet

The Rare Disease Awareness Bracelet consist of pink, blue and green wooden beads with silver and diamante fillers. Includes a diamante Awareness Ribbon charm.

Raising SMA Awareness with Kerry Walsh

“My name is Kerry Walsh, I was born on the 22nd of October 1997 in a set of fraternal twins. Around the age of one, my parents had realized that I wasn’t developing like my sister was. I was taken to the doctor where I was diagnosed with low muscle tone. We tried months of physical therapy but unfortunately, there was no improvement. I was then sent for a muscle biopsy in my neck. They discovered that I had SMA (Spinal Muscular Atrophy). I was given the life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had…”

Kerry Walsh

“Life is a beautiful gift and it’s our responsibility to live it to the full, that is what I plan on doing!” – Kerry Walsh

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Breast Pain Causes and When to Seek Help

breast pain causes breast cancer awareness

To experience occasional breast pain is common, however, breasts don`t typically hurt. There are various causes of breast pain, also known as mastalgia – which is categorised as cyclical or non-cyclical.

The 2 most common factors of breast pain are hormone fluctuation (puberty, pregnancy and menopause) and fibrocystic (lumpy) breasts. Other causes of breast pain also include breastfeeding, unhealthy diet, large breast size, a poorly fitted bra, pain from scar tissue after breast surgery, medications for heart disease antibiotics, antidepressants, hormone therapy, and an increase of epinephrine levels in the breast tissue due to smoking. Sometimes breast pain is caused by irritation of the chest, arms, or back muscles. This is common if you’ve participated in physical activities like raking, rowing, shoveling, and waterskiing.

Breast Pain and Breast Cancer

Breast pain is not generally linked to breast cancer, and having breast pain or fibrocystic breasts does not mean you are at higher risk of developing breast cancer.

If you have breast pain in only one area and that is consistent through the month with no fluctuations in pain level, call your doctor to help determine if your symptoms are related to cancer. Examples of diagnostic tests can include a mammogram, ultrasound, and MRI or biopsy.

If you have sudden breast pain that comes with chest pain, tingling, and numbness in your limbs, do seek medical attention immediately as these symptoms can indicate a heart attack.

When to Seek Help

Make an appointment to see your doctor if your pain:

– keeps you from participating in your usual daily activities
– lasts longer than 2 weeks
– accompanies a new lump that appears to be getting thicker
– seems to be concentrated in one specific area of your breast
– seems to get worse with time

Source and more information: healthline.com


Information and Answers Regarding Breast Pain

An excerpt from Solving the Mystery of Breast Pain by Judy C. Kneece, RN, OCN

Breast pain is frightening because most women associate pain with cancer. However, in reality, breast pain may be uncomfortable and annoying, but it is usually not unbearable. What seems unbearable is the fear that it may be cancer. However, less than 10 percent of women diagnosed with breast cancer in one large clinical study had breast pain as a symptom of their cancer. Most breast pain is not associated with cancer but from the female hormones the body makes monthly.

But, because breast cancer could be a cause, a physician should be notified of recurring breast pain. A physician’s examination and a mammogram can help determine the cause of the pain. All recurring breast pain needs evaluation to determine its cause.

To assist your physician, it will be helpful if you understand the different kinds and characteristics of breast pain. Pain in the breast is referred to by physicians as mastalgia or mastodynia. This pain may be characterized as cyclic, noncyclic or musculoskeletal.

Cyclic Pain appears to be related to the female hormones estrogen, progesterone and prolactin. Their effects on breast tissue vary at different times of the month and life cycle. Pain related to these changes usually begins at ovulation and increases until the menstrual period begins. After menstruation, the pain decreases. Both breasts are usually involved, but occasionally, one breast will experience a greater degree of pain. Often, the pain is greatest in the upper-outer quadrants (from the nipple back toward the armpit) and sometimes radiates to the arm pit and arm. The discomfort is felt throughout the area and is often described as a dull, aching pain, as if the breast were filled with milk. Pre-menopausal women experience this pain. Menopause relieves the symptoms. This bilateral (both breasts) pain has no relationship to cancer.

Noncyclic Pain differs from cyclic pain in that it has no relationship to the menstrual cycle and the female hormones. This pain can be continuous or may only occur from time to time. The pain is usually localized to a specific area in one breast (unilateral). Described as a sharp, stabbing or burning sensation in the breast, the pain is most often found after age 30. This pain has been linked to fluid-filled cysts, fibroadenomas, duct ectasia, mastitis, injury and breast abscesses. Treatment may include withdrawing the cyst fluid, surgically removing the fibroadenoma, prescribing antibiotics, or having surgery for duct ectasia, mastitis or abscesses.

Some noncyclic pain is also related to musculoskeletal causes. The most common is pain that comes from a pinched nerve in the back, cervical or dorsal radiculitis. Often, a history of back injury, scoliosis, arthritis or osteoporosis is involved. One breast will be painful.

Tietze’s Syndrome: Another cause of breast pain originates in the area of the breast bone and ribs and is known as Tietze’s syndrome. It is commonly called painful costochondritis (inflammation of the cartilage of the ribs). This pain is localized to the medial half (closest to breastbone) and is tender when pressure is placed on the breastbone, when the rib cage is moved, or when a deep breath is taken. This pain often occurs after doing heavy lifting or activities that stretch the upper body. If the pain is from costochondritis, ibuprofen or aspirin, taken for several days on a regular basis, will usually reduce the pain.

Phlebitis: Other causes for breast pain may be from phlebitis (an inflamed vein), called Mondor’s syndrome. Even infected teeth have been shown to cause referred breast pain. Additionally, some herbal products such as Ginseng and Dong Quai will cause breast tenderness and pain as can many prescription medications.

Pain associated with cancer, is usually noncyclic, located in one breast and is often accompanied by a lump, skin retraction (dimpling), a bulge on the breast, skin changes (having an orange peel look) or a suspicious mammogram. All noncyclic pain that recurs should be examined by a physician.

Determining the Type of Pain:
If you cannot determine if your pain is cyclic or noncyclic, keep a record of the pain you experience daily and its time in your cycle. After one – two months, you will be able to tell if the pain is associated with the fluctuating hormones of your menstrual cycle (cyclic), or if it bears no relationship to hormonal changes (noncyclic).

Breast Pain Evaluation: If you have recurring breast pain, schedule a breast exam with a physician. After a complete history and breast exam, a mammogram will probably be ordered (if over 35) to search out any cause not apparent on the exam. If the exam and the mammogram are negative (no suspicious findings), a search to determine what type of pain and how to relieve your pain should be started. If a lump or cyst is found, a biopsy may be needed to remove the suspicious area or to rule out cancer. It is important to inform your physician of any new prescription or over-the-counter medications you are taking, including herbal supplements.

Ninety percent of breast pain in diagnosed women with breast cancer is not related to cancer. Pain with breast cancer is rare, but all pain needs a thorough evaluation by a physician to be assured that cancer is not present.

For more information, see Solving the Mystery of Breast Pain. This book gives straightforward answers to these questions for the woman who wants to understand and monitor her own breast health.

Source: subrad.com


*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.


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Sarcoma Cancer – Risk Factors, Signs & Symptoms

Sarcoma Cancer Risk Factors, Signs & Symptoms

A brief introduction to Sarcoma Cancer, the risk factors and what signs and symptoms to look out for. This post is purely for general information purposes and by no means replace the advice of a medical practitioner.

July is Sarcoma Cancer Awareness Month

Sarcoma is a general term that is used for a broad group of cancers which arise in the bones and the soft connective tissue such as fat and muscle, blood vessels and nerves, tendons and cartilage. This type of cancer can occur in various locations in your body.

Though there are more than 70 different types of sarcoma, they can be grouped into 2 main types: bone sarcoma, or osteosarcoma, and soft tissue sarcoma.

In most cases, it’s not clear what causes sarcoma. Family history and exposure to chemicals or radiation may increase risk.

Risk factors

Factors that can increase the risk of sarcoma include:

  • Inherited syndromes. Some syndromes that increase the risk of cancer can be passed from parents to children, like familial retinoblastoma and neurofibromatosis type 1.
  • Radiation therapy for cancer. Radiation treatment increases risk of developing a sarcoma later.
  • Chronic swelling (lymphedema). Lymphedema is swelling caused by a backup of lymph fluid that occurs when the lymphatic system is blocked or damaged. It increases the risk of a type of sarcoma called angiosarcoma.
  • Exposure to chemicals. Certain chemicals, such as some industrial chemicals and herbicides, can increase the risk of sarcoma that affects the liver.
  • Exposure to viruses. The virus called human herpesvirus 8 can increase the risk of a type of sarcoma called Kaposi’s sarcoma in people with weakened immune systems.

The symptoms and the treatment will vary depending on the type of sarcoma, the location and other factors.

Signs and Symptoms

  • A lump that can be felt through the skin; it may/may not be painful
  • Bone pain
  • A broken bone that happens unexpectedly, such as with a minor injury or no injury at all
  • Abdominal pain
  • Weight loss

Treatment may include surgery, radiation and chemotherapy. Sarcomas can be treated, often by having surgery to remove the tumor.

Children and young adults get osteosarcoma more often than adults. Because active, healthy children and teenagers often have pain and swelling in their arms and legs, osteosarcoma might be mistaken for growing pains or a sports injury. If your child’s pain doesn’t get better, or gets worse at night, and is in one arm or leg rather than both, please talk to a doctor. Adults with this kind of pain should see a doctor right away.


Sources: mayoclinic.org, webmd.com, cansa.org.za

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Suicide Awareness and Prevention

Suicide Awareness and Prevention

Looking out for our friends and loved ones is an important part of preventing suicides. Easy access to mental health treatment can be key to saving the life of someone who struggles with suicidal thoughts. Seeing them go through the pain and struggle to cope with their thoughts and feelings can be hard, and approaching and encouraging them to seek therapy can be a tricky situation. If done incorrectly, you could alienate the person or turn them against the idea entirely. However, there is an effective way to have this conversation. Learn How to Encourage Someone to See a Therapist.

World Suicide Prevention Day is commemorated around the world on the 10th of September to promote commitment and action to prevent suicide. On average, almost 3 000 people commit suicide every day, and for each person who completes a suicide, 20 or more may attempt to end their lives.

About one million people commit suicide each year. Every 40 seconds, the loss of a person who killed themselves shatters the lives of family and friends. Those who stay behind are affected severely and the it can take many, many years to deal with the emotional trauma, and to heal from such an ordeal.

“A suicide is like a pebble in a pond. The waves ripple outward.”

Suicide Hotlines and Crises lines in South Africa

In South Africa, 23 suicides a day are recorded and 230 serious attempts. You can call SADAG  to talk on behalf of a loved one, colleague, or friend. Trained counsellors are there to help and refer you to local counsellors, facilities and Support Groups.

Risk Factors

All people can be at risk of suicide. The risk factors for someone feeling suicidal or making an attempt at suicide may include:

  • Depression, other mental disorders, or substance abuse disorder
  • Certain medical conditions
  • Chronic pain
  • A prior suicide attempt
  • Family history of a mental disorder or substance abuse
  • Family history of suicide
  • Family violence, including physical or sexual abuse
  • Having guns or other firearms in the home
  • Having recently been released from prison or jail
  • Being exposed to others’ suicidal behavior, such as that of family members, peers, or celebrities

Warning Signs

The warning signs of suicide can allow you to direct individuals who may be considering suicide to get help. Behaviors that may be warning signs include:

  1. Talking about wanting to die or wanting to kill themselves
  2. Suicidal ideation: thinking, talking, or writing about suicide, planning for suicide
  3. Substance abuse
  4. Feelings of purposelessness
  5. Anxiety, agitation, being unable to sleep, or sleeping all the time
  6. Feelings of being trapped
  7. Feelings of hopelessness
  8. Social withdrawal
  9. Displaying extreme mood swings, suddenly changing from sad to very calm or happy
  10. Recklessness or impulsiveness, taking risks that could lead to death, such as driving extremely fast
  11. Mood changes including depression
  12. Feelings of uselessness
  13. Settling outstanding affairs, giving away prized or valuable possessions, or making amends when they are otherwise not expected to die (as an example, this behavior would be typical in a terminal cancer patient but not a healthy young adult)
  14. Strong feelings of pain, either emotional or physical
  15. Considering oneself burdensome
  16. Increased use of drugs or alcohol

How You Can Help

How To Be Helpful to Someone Who Is Threatening Suicide:

• Be direct. Talk openly and matter-of-factly about suicide.
• Be willing to listen. Allow expressions of feelings. Accept the feelings.
• Be non-judgmental. Don’t debate whether suicide is right or wrong, or whether feelings are good or bad. Don’t lecture on the value of life.
• Get involved. Become available. Show interest and support.
• Don’t dare him or her to do it.
• Don’t act shocked. This will put distance between you.
• Don’t be sworn to secrecy. Seek support.
• Offer hope that alternatives are available but do not offer glib reassurance.
• Ask if you may contact a family member
• Take action. Remove means, such as guns or stockpiled pills.
• Don’t leave them alone, get help from persons specializing in crisis intervention and suicide prevention.
• If necessary get in touch with the police

Be Aware of Feelings: Many people at some time in their lives think about suicide. Most decide to live because they eventually come to realize that the crisis is temporary and death is permanent. On the other hand, people having a crisis sometimes perceive their dilemma as inescapable and feel an utter loss of control. These are some of the feelings and thoughts they experience:

  • Feeling Hopeless
  • I can`t stop the pain
  • I`m not worthy
  • Can not sleep
  • Can not work
  • Can not eat
  • I can`t make the sadness go away
  • I can not see a way out
  • Can`t make decisions
  • Can`t take control
  • Feeling helpless
  • Can`t see a future without pain
  • Can`t get someone`s attention
  • Can`t think clearly
  • Can`t get out of depression

Sources: www.gov.za, www.sadag.org, www.nami.org, en.wikipedia.org


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Williams Syndrome: Causes, Symptoms, Common Features and Treatment

Williams Syndrome (WS), also known as Williams-Beuren syndrome, is a rare genetic disorder that is present at birth. The condition can affect anybody, and is known to occur equally in both females and males, and in every culture. WS causes numerous medical issues including cardiovascular disease, musculoskeletal problems, delays in development, and learning disabilities. These often occur side by side with highly social personalities, striking verbal skills, and a fondness for music.

Williams Syndrome: Extraordinary Gifts, Unique Challenges

May is Williams Syndrome Awareness Month

What Causes Williams Syndrome?

Williams syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7. The deletion occurs in either the egg or the sperm used to form the child with Williams syndrome. Accordingly, the deletion is present at the time of conception. It is likely that the elastin gene deletion accounts for many of the physical features of Williams syndrome. Some medical and developmental problems are probably caused by deletions of additional genetic material near the elastin gene on chromosome #7. The extent of these deletions may vary among individuals. – Williams Syndrome Association

Signs and Symptoms of WS

Signs and symptoms of Williams Syndrome can vary, but generally include:

  • a distinctive facial appearance;
  • mild to moderate intellectual disability;
  • a unique personality that combines over-friendliness and high levels of empathy with anxiety.

People with WS typically have difficulty with tasks such as drawing and assembling puzzles. They tend to do well on tasks that involve spoken language, music, and learning by repetition. They also often have very outgoing, engaging personalities and tend to take an extreme interest in other people. Attention deficit disorder (ADD), problems with anxiety, and phobias are common. Learn more

Common Features of WS include:

  • Characteristic facial appearance
  • Heart and blood vessel problems 
  • Hypercalcemia (elevated blood calcium levels) 
  • Low birth-weight / slow weight gain 
  • Feeding difficulty (generally limited to the early years) 
  • Irritability (colic during infancy) 
  • Dental abnormalities 
  • Kidney abnormalities 
  • Hernias 
  • Hyperacusis (sensitive hearing) 
  • Musculoskeletal problems 
  • Overly friendly (excessively social) personality 
  • Developmental delay, learning challenges and attention deficit disorder

Treatment Options for Williams syndrome

There is currently no cure for Williams syndrome, and no known way to prevent it.

Treatment is usually based on the individual’s symptoms, and involves easing the symptoms connected to the condition. There is no standard protocol. Management may include:

  • Feeding therapy for infants with feeding problems
  • Early intervention programs and special education programs for children with varying degrees of developmental disabilities
  • Behavioral counseling and/or medications for attention deficit disorder and/or anxiety
  • Surgery for certain heart abnormalities
  • Medications or diet modifications for hypercalcemia
  • Orthodontic appliances or other treatments for malocclusion of teeth
  • Gonadotropin-releasing hormone agonist for early puberty
  • Learn more

Regular cardiovascular checkups are necessary to monitor and track any potential problems.

Narrowed blood vessels can be treated if they cause symptoms, physical therapy and speech therapy can also be beneficial.

Medical conditions can affect the lifespan of those with Williams syndrome.

Visit the sources below for more in-depth information.

Sources: healthline.com, williams-syndrome.org, rarediseases.info.nih.gov

*All information/posts on this blog is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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Tips for a Healthy Lifestyle

Health is defined as a state of complete physical, mental, and social well-being – and not merely the absence of disease. Before the industrial revolution, fitness was defined as the ability to carry out activities during the day without undue fatigue. However, with changes in lifestyles, physical fitness is now considered to be a measure of the body’s ability to function efficiently and effectively – in work and leisure activities – to be healthy, to resist hypokinetic diseases, and to meet emergency situations.

When you adopt a healthy lifestyle, not only are you taking active control to improve your quality of life, but you are also setting a positive example for other members of the family, specifically the children!

Tips for a Healthy Lifestyle

  1. Eat a variety of foods
  2. Base your diet on plenty of foods rich in carbohydrates
  3. Replace saturated with unsaturated fat
  4. Enjoy plenty of fruits and vegetables
  5. Reduce salt and sugar intake
  6. Eat regularly, control the portion size
  7. Drink plenty of fluids
  8. Maintain a healthy body weight
  9. Get on the move, make it a habit!
  10. Start now! And keep changing gradually.

Good nutrition

Good nutrition is a vital part of a healthy lifestyle. Your food choices affect your health — not just in how you feel today, but also tomorrow and in the future. Combined with physical activity, your diet can help you to reach and maintain a healthy weight, reduce your risk of chronic diseases, and promote overall health.

Exercise improves your health

Exercise strengthens your heart and improves circulation. Increased blood flow raises the oxygen levels in your body, which helps to lower your risk of heart diseases like high cholesterol, coronary artery disease, and heart attack. Regular exercise can also lower your blood pressure and triglyceride levels.

There are many types of physical activities one can do including walking, swimming, cycling, running, dancing, yoga, pilates, and jumping, to name a few. Find what is most enjoyable and what works for you, and commit to a daily routine.

Benefits of Regular Exercise

  • Increase feeling of happiness,
  • Improve your mental health and mood,
  • Help with weight loss,
  • Improve muscle and bone strength,
  • Increase energy levels,
  • Reduce risk of chronic disease,
  • Help your body manage blood sugar and insulin levels,
  • Improve skin health,
  • Improve brain health and memory,
  • Reduce anxiety sensitivity,
  • Help with relaxation and sleep quality,
  • Reduce pain,
  • Improve positive self-image and boost self-esteem,
  • Improve sexual desire, function and performance in both men and women,
  • Help with quitting smoking by reducing cravings and withdrawal symptoms,
  • Inspire others to make time for exercise!

How to Make Exercise Part of Your Regular Routine

  • Make everyday activities more active. Even small changes can help. You can take the stairs instead of the elevator. Walk down the hall to a coworker’s office instead of sending an email. Wash the car yourself. Park further away from your destination.
  • Be active with friends and family. Having a workout partner may make you more likely to enjoy exercise. You can also plan social activities that involve exercise. You might also consider joining an exercise group or class, such as a dance class, hiking club, or volleyball team.
  • Keep track of your progress. Keeping a log of your activity or using a fitness tracker may help you set goals and stay motivated.
  • Make exercise more fun. Try listening to music or watching TV while you exercise. Also, mix things up a little bit – if you stick with just one type of exercise, you might get bored. Try doing a combination of activities.
  • Find activities that you can do even when the weather is bad. You can walk in a mall, climb stairs, or work out in a gym even if the weather stops you from exercising outside.

sources: eufic.org, healthline.com, medlineplus.gov, wikipedia.org, greatist.com

*All information/posts on this blog is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.

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Guide to Maintaining Accessibility in Buildings for All Persons with Disabilities

Maintaining accessibility in buildings

Disability is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth, or occur during a person’s lifetime.

Disability can be broken down into a number of broad sub-categories, which include the following 8 main types of disability:

  • Mobility and Physical Impairments.
  • Spinal Cord Disability.
  • Head Injuries (TBI) – Brain Disability.
  • Vision Disability.
  • Hearing Disability.
  • Cognitive or Learning Disabilities.
  • Psychological Disorders.

Making buildings more accessible to all persons with disabilities should be on top of your to-do list if your building is not complaint yet. Below is a guide to help you in the right direction. It is important to re-access your building`s accessibility program regularly, or at least every 3 years to ensure it`s up to standard.

A good accessibility expert will often be able to suggest affordable solutions. Develop an implementation plan for addressing each issue that the report identifies, according to the issues’ priorities as soon as possible after the audit – and develop and Access Handbook that staff who work in the relevant areas can refer to — and update — while working.

Maintaining accessibility in buildings

Outside the building

Make sure that parking spaces for people with disabilities are accessible. Check:

  • That parking spaces and drop-off points are kept clear for people who need them
  • The surface and lighting around the building and on the paths that customers/visitors use to get to the building.
  • That the main entrance door is correctly designed, and that at least one entrance is accessible if the main entrance is not accessible.

Ramps and steps

If any public service areas have slopes that are steeper than 1:20, make sure that both steps and ramps are available, and that they are correctly designed.

Wheelchair Ramp

Steps and lifts

Steps

Avoid putting steps within a floor in a building, where possible. Where steps are necessary, provide a ramp or platform lift as appropriate.

Lifts

Provide accessible lifts in all new buildings that have more than one floor.
Make sure that the lifts are designed to best practice guidelines.
Check the lifts’ operation regularly.
Keep the lifts clear.

Corridors and doors

Check that:

  • Corridors and routes are not obstructed by deliveries, machinery, or anything else
  • Doors are kept open where possible
  • Doors that are closed are easy for customers/visitors to open
  • Doors are wide enough for all customers/visitors.

Signs

Public buildings should have signs to let your customers/visitors understand where they need to go. The signs should:

  • Be designed according to best practice guidelines
  • Have Braille or raised lettering wherever possible
  • Have writing that is large enough for your customers/visitors to read
  • Use appropriate symbols
  • Not be ”home made“
  • Be placed where your customers will:
    • Be able to see them easily
    • Not walk into them.

Reception areas and waiting rooms

Public service reception areas and waiting rooms should be designed, and maintained, to best practice guidance.

  • Provide correctly designed seats. A mixture of types and sizes of seats is best. Some customers may need to use arm-rests, and some may find arm-rests awkward.
  • Provide an induction loop system in at least one accessible meeting room.

Intercoms, queuing systems, ticket offices, information desks

Consider how you will inform customers/visitors that they are next in line. Remember that some of them might not be able to:

  • Read visual information
  • Hear audio information or intercoms
  • Reach tickets or intercoms that are very high, very low, or awkward to reach
  • Understand complicated language or jargon.

Plan the location, output, and language of your intercoms, queuing systems, ticket offices, or information desks carefully. If these are inaccessible to some of your customers/visitors, make sure that your staff can help them by speaking — or giving written information.

Toilets

If you provide toilets for the public, provide toilets that customers/visitors with disabilities can use. Follow best practice guidance carefully.

  • Provide an alarm system in your accessible toilets, and test it regularly to make sure that a member of staff will help somebody in an emergency.
  • Make sure that accessible toilets are not used for storing cleaning equipment, deliveries, or anything else.
  • Provide sanitary bins in accessible toilets, and put them where they will not obstruct wheelchair users.

Interior design

Light

The light in your public buildings should be distributed evenly. There should be no large variations in lighting levels and the light should not be too bright or too dark. Avoid glossy, shiny and polished surface finishes and keep reflections, shadows, and glare to a minimum.

Visual contrast

Use differences in colour and colour intensity to create visual contrast. That will help customers/visitors with vision impairments to:

  • Distinguish between walls and floors
  • Distinguish between door backgrounds and fittings
  • Avoid hazards
  • Find their way around the building.

Source: National Disability Authority


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The Right to Inclusive and Quality Education for Children with Disabilities

Inclusive and Quality Education for Children with Disabilities

South Africa commemorates National Disability Rights Awareness Month annually between 3 November and 3 December. This post aims to raise awareness about children and young people with disabilities, and their right to empower themselves through access to quality education and lifelong learning.

Disability Rights Awareness Month 2019

Children with disabilities are one of the most socially judged and excluded groups in society. They face various forms of discrimination, which leads to isolation and alienation from community, society and school.

The general attitude toward children with disabilities, and the lack of resources to accommodate these children, compound the challenges they face. The lack of easy access to school – and the inability of the education system to make sure that they receive quality education is of equal concern.

The Convention on the Rights of the Child (CRC) and the Education For All framework aim to meet the learning needs of all children and youth. The Convention on the Rights of Persons with Disabilities (CRPD) recalls those obligations and further specifies that “States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children”, and “ensure an inclusive education system at all levels and lifelong learning” (articles 7 and 24).  

unicef.org

To ensure quality education for children with disabilities the following must be addressed:

  • Promote accessible and inclusive learning spaces – Ensure physical accessibility for children with disabilities, including commuting and moving around in the school environment as well as having safe access to water and sanitation facilities whilst at school. Likewise, learning materials need to be made available in accessible formats to suit the needs of children with different types of disabilities. 
  • Invest in teacher training for inclusive education – Where available, approaches to education for children with disabilities have changed over the years. While the initial emphasis was on ‘special schools’, there has been a shifting that indicates a preference towards inclusive education. Preparation and orientation of teachers for inclusion should happen through teacher training which, besides the child-centred pedagogy will also address attitudes towards children with disabilities, and how to prepare/support families for them to be encouraged to keep their children in school and informed about their children’s potential.
  • Take a multi-sectoral approach – Barriers that prevent children with disabilities to access education are located both within and outside the education system, for example transport, social services for assistive devices, health etc.
  • Involve the community – The education of children with disabilities must include a strong involvement from community as well as from parents, being two key factors which determine the success of IE.
  • Collect data for evidence building and progress monitoring – In order to have evidence to advocate for inclusion and create a baseline for monitoring progress in disability mainstreaming in the educational system, it is required to collect and disaggregate data on the patterns of enrolment, attendance, completion, attainment and drop out as a result of having a disability (in addition to gender, ethnicity, income level, geographical location etc.).  Also other qualitative and quantitative studies, like one on Out Of School Children, provide important baselines and as such must become a regular component of monitoring education standards.  Research findings are helping to define strategies to ensure specific target groups are reached.

Inclusive Education in South Africa

“In 2015, it was estimated by Human Rights Watch that over 600,000 children with disabilities are not in the school system in South Africa. Since the release of these statistics, it has come to light that this number may be even higher, as the government is yet to determine the exact number of children with disabilities not attending schools.” dailymaverick.co.za

Inclusive Education recognises the right of ALL children to feel welcomed into a supportive educational environment in their own community. It refers to the capacity of ordinary local schools and ECD Centres to respond to the needs of ALL learners, including those requiring extra support because of learning or physical disability, social disadvantage, cultural diffrences or other barriers to learning.

We now have a strong legislative and policy framework that promotes an Inclusive Education system in South Africa. The South African Constitution, The South African Schools Act, White Paper 6, The UN Convention on the Rights of Persons with Disabilities, UN Convention on the Rights of the Child all place obligations on the State to ensure ALL children are given access to meaningful participation in learning in the general education system. – included.org.za

Be Inspired

Earlier this year we were fortunate enough to join hands in raising SMA Awareness with Kerry Walsh, an inspiring young lady with a “never say no” attitude.

Kerry was diagnosed with SMA (Spinal Muscular Atrophy) around the age of one, and was given the life expectancy of 5 years old. Today, at age 21, she is a motivational speaker and extremely passionate about changing the level of accessibility in South Africa!! Kerry was an ambassador for the Nappy Run 2016-2017, and was nominated as a Margaret Hirsch Women in Business 2017-2018!! Learn more about Kerry`s story and her mission to raise SMA Awareness and changing the level of accessibility in SA.

Kerry Walsh
Kerry Walsh

Sources: https://www.unicef.org/disabilities/index_65316.html, https://www.right-to-education.org/page/united-nations-instruments, http://www.included.org.za/news/what-is-inclusive-education/

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Disability Rights Awareness Month

Disability Rights Awareness Month 2019

South Africa commemorates National Disability Rights Awareness Month annually between 3 November and 3 December.

3 December is the International Day of Persons with Disabilities, and is also commemorated as National Disability Rights Awareness Day.

The month long campaign carries weekly sub-themes which are reflected in the Medium Term Strategic Framework (2019-2024) of government. The following sub-themes are intended to focus conversations on priority areas identified by the disability sector, which also link to the seven priorities of government:

Week 1: Children and young people with disabilities empowered to chart their own destiny through access to quality lifelong learning
Week 2: A built environment accessible to all persons with disabilities
Week 3: Persons with disabilities as equal players in building inclusive economies
Week 4: Children and women with disabilities – feeling and being safe as equal citizens in their communities

Disability is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth, or occur during a person’s lifetime.

Society is encouraged to be part of the conversation online by using the hashtag #DisabilityInclusiveSA

As published at www.gov.za/DRAM2019


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Epilepsy Awareness – Risk Factors & Causes

epilepsy awareness

Epilepsy, also known as seizure disorder, is a neurological disorder, associated with abnormal electrical activity in the brain. It is marked by sudden recurrent episodes of sensory disturbance, unusual behaviour, sometimes loss of consciousness, and convulsions.

Anyone can develop epilepsy at any stage during their lifetime. The disorder affects both males and females of all ages, races, and ethnic backgrounds. It is not contagious or infectious, nor is it a mental illness or psychiatric disorder.

Risk Factors

Factors that may increase your risk of epilepsy:

  • Age: The onset of epilepsy is most common in children and older adults, but the condition may occur at any age, at any time.
  • Family history: If you have a family history of epilepsy, you may be at an increased risk of developing a seizure disorder.
  • Head injuries: Head injuries are responsible for some cases of epilepsy. Reduce your risk by wearing a seat-belt while riding in a car and wear a helmet when cycling, skiing, riding a motorcycle or engaging in other activities with a high risk of head injury.
  • Stroke and other vascular diseases: Stroke and other blood vessel (vascular) diseases can lead to brain damage that may trigger epilepsy. To reduce your risk; limit your alcohol consumption and avoid cigarette smoking, maintain a healthy diet, and exercise regularly.
  • Dementia: In older adults, Dementia can increase the risk of epilepsy.
  • Brain infections: Infections such as meningitis causes inflammation in your brain or spinal cord and may increase the risk of epilepsy.
  • Childhood Seizures: High fevers during childhood can sometimes be associated with seizures. Children who have seizures due to high fever generally won’t develop epilepsy. The risk will increase if a child has a long seizure, another nervous system condition or a family history of epilepsy.

Causes

The underlying causes of the epilepsy is unknown (idiopathic epilepsy) in approximately 66% of cases. Possible underlying causes of symptomatic epilepsy include: A head injury occurring at any age, A birth injury, Alcohol and drug abuse.

National Disability Rights Awareness Month

According to research, 5% – 12% of all South Africans live with some form of disability – and 20% of these have epilepsy – which is double the amount in developed countries. About 1 in 20 people will have an epileptic seizure at some point in their lives, while 1 in 100 will have seizures on a regular basis.

People with epilepsy are still able to do physical and intellectual work, and should not be treated differently. South Africa commemorates National Disability Rights Awareness Month every year from 3 November – 3 December.


Shop Online

The Epilepsy Awareness Bracelet consist of purple wooden beads with crystals – and a Diamanté Awareness Ribbon Charm.

To place and order, contact the agent in your area or shop online.


Sources: https://www.gov.za, https://epilepsy.org.za, https://www.mayoclinic.org

All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the armsofmercy.org.za website do not offer any diagnosis or treatment, and will not be held liable for any adverse health effects, losses and/or damages whatsoever. Any action you take as a result of the information is at your own risk, and does not replace the advice of a qualified medical practitioner. Always consult with your medical healthcare practitioner.