Jason van't Slot is an extreme cyclist, public speaker and s
| Author | Karen Watkins karen.watkins@inl.co.za |
| Published date | 27 May 2022 |
| Publication title | Sentinel News |
This achievement during Cystic Fibrosis Awareness Month set a new cystic fibrosis world record and also raised R51 000 to help bring lifesaving medication to South Africa for those with the illness.
While there is no cure for cystic fibrosis and many of those who have it die in their 20s and 30s from lung failure, according to the South African Cystic Fibrosis Association, a new drug, which is known as Trikafta in America and Kaftrio in Europe, genetically modulates and corrects the defective protein behind cystic fibrosis, restoring lung function, reducing symptoms and extending lifespan.
“The cystic fibrosis community didn’t know if a medication for this chronic lung condition would be available in our lifetimes. Now it is, but due to our geographic location and the medication’s financial cost it’s impossible for most of us to get,” says Jason.
Presently only 12% of those with cystic fibrosis around the world have access to the drug which has only been around for about four years, he says.
Margy Gibbons, a social worker at the cystic fibrosis clinic at Red Cross War Memorial Children’s Hospital, has over 20 years experience working with people living with this recessive genetic disorder.
”CF primarily affects the lungs and the pancreas. Thick sticky mucous can collect in the lungs resulting in risk of infections, and since the pancreas is also affected this makes digestion of food impossible for some living with CF,” she says.
Treatment includes daily physiotherapy, using digestive enzymes every meal and snack and careful medical follow-up.
As for breathing during cycling, Jason says, it’s like breathing through a straw. “I’m known for coughing and spluttering during a race with phlegm all over me. It's like breathing in syrup which then lines all my organs making it a breeding ground for bacteria and leaves scarring on the organs causing permanent damage.”
Cycling, especially mountain biking, is good for him as the vibration helps to dislodge the phlegm, he says.
Another complication is his pancreas and diabetes. “It has features of both type 1 and type 2 because the pancreas is still working, but there are differences in how it develops and is treated,” says Jason.
Another issue is vitamin K which is responsible for clotting. “This was the doctor’s biggest concern when I did the Cape Epic...
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