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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.


*All information in this post is published for general information and educational purposes only. Arms of Mercy NPC and the 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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Fundraising for Tristan Swanepoel – Cystic Fibrosis

Tristan Swanepoel

Tristan`s story:

“Tristan Swanepoel was born with Cystic Fibrosis (CF).  Completely genetic, incurable, and as the Doctors like to say: “born terminal”.  If you have seen the movie “Five Feet Apart” you will have had a glimpse in to the life of a CF’er.
When he was first diagnosed the doctor was so shocked about the state of his lungs (they did a CT), he said it is a miracle that Tristan can function without oxygen, as he has holes, not properly functioning lungs.

We cannot afford Tristan’s medications, now more than ever, as I lost my job.  We still go to Steve Biko to see Doctors and get his medications. The meds are the really astronomically expensive part of our day to day life.

Tristan was only diagnosed 5 years ago, and for the first 3 years, they could not trace the 2nd gene that combined with the Df508 gene to cause CF.  But he had every single symptom. The Dr’s were fascinated as he presented with all symptoms, but they could not conclusively prove it without the second gene being found.  After a series of bloods where they went looking specifically for genes, they finally found the second gene.  HE was now not just presumed CF positive, it was fact. The missing puzzle piece was found.

We still stare the fact that his lungs are deteriorating day by day in the face.  He builds no anti-bodies for any disease, no vaccinations have a chance to build his system up.The missing gene is so unknown that the doctors have to monitor him for any diseases that start to show. His type of CF mutates from the genes that cause it, and his 2nd gene is so rare, they have no frame of reference. They cannot prepare us for what might come.

CF sufferers with other gene mutations end up with: kidney failure, lupus, cancer, liver disease, heart disease, to name a few.

But we stay hopeful, stay on our knees. The doctors initially estimated he would need to have a double lung transplant by the age of 16. He is turning 14 on 26 March 2021, and he is still not on oxygen. He is still breathing on his own. He does complain about his legs hurting, a lot. And this is being looked in to.

He and his twin brother, Heyden, sat together to pick the new colours and charms for the new bracelets.They lean on each other every day. And what I treasure is even though they are “Teenagers” now, they still will hug me and tell me they love me. This is something in my life that I will treasure forever.”

This is a horrible disease and an immense battle to fight and so we continue raising funds to assist with Tristan`s ongoing medical expenses. Together we can make a positive difference and give him a fighting chance. Please support our fundraising initiative by ordering your bracelets today. Every little bit goes a long way!

Alternatively, please consider a donation. Any and all donations welcome. REF: Tristan Swanepoel.

Fundraising for Tristan Swanepoel

Lean on Me Bracelets © Arms of Mercy NPC

Lean on Me Bracelets

The “Lean on Me” Bracelets for Tristan consist of coloured wooden beads with crystal, silver and diamante fillers.
1. Silver with Puzzle charm
2. Black with Four-Leaf clover charm
3. Silver, black & red mix with crown charm

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

Lean on Me Bracelets © Arms of Mercy NPC
Lean on Me Bracelets

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65 Roses Bracelets

The “65 Roses Bracelets” for Tristan consist of dark purple wooden beads with crystal, silver and diamante fillers.

Charm options:
Rose bud / Angel Wings / Tree of Life Heart.

Some children struggle to pronounce Cystic Fibrosis and say “65 Roses”.

65 Roses Bracelets © Arms of Mercy NPC
65 Roses Bracelets

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