Walking routes, pony rides, shows, all kinds of activities to help research against cystic fibrosis. This Sunday, September 29, 2024, the association Overcoming cystic fibrosis organizes like every year the Turns of Hope this awareness day at the Benoit-Frachon center in Belfort. This disease mainly affects the lungs, but also the digestive and reproductive systems, it is also fatal, hence the need to raise funds to finance research and find new treatments. Anaïs is 16 years old, she suffers from the disease which is restrictive on a daily basis but the adolescent refuses to be reduced only to her pathology.
Anaïs, sick but not only
Of course Anaïs is ill, of course her life expectancy is lower than average but these elements do not sum it up: “It’s not a personality, it’s me but there are many other important things, explains the teenager. I like going out with my friends, art, drawing, I like reading”she adds. In high school, her friends know about her illness, worry a little more when she is sick but the 16 year old girl doesn’t really feel any different from them. “For me, I am an ordinary child but with medication and hospital visits. I have always lived with the illness, for me it is normal”she says. Anaïs follows daily treatment, she is also medically monitored at the hospital, she goes there every three months for check-ups.
If the young girl wants to live her life, she is nevertheless convinced of the need to commit to supporting research. Recent advances in medicine have concrete impacts on daily life: “There is a new pill, Kaftrio, before I didn’t have it and I coughed a lot, now that I take it, I don’t cough at all anymore, says Anaïs. It’s important to have new pills all the time to help us.” A treatment that the teenager has been taking since 2022.
The difficulty for loved ones to find the right balance
Anaïs’ mother, Clara manages the Virades de l’Espoir in Belfort, a commitment that came with the birth of her daughter, experienced as a shock in the family: “It has turned our daily lives upside down, it’s a tsunami, everything is destroyed, we have to rebuild everything and live differently”says the mother. Her commitment to the association Vaincre la cystic fibrosis is time-consuming, but necessary for her, thanks to this investment, the mother fights in her own waybut Clara recognizes that sometimes you have to succeed in anchoring yourself in your daughter’s daily life. “There was a period in her life, when she started this new treatment, Kaftrio, there were adverse effects. I was so taken by the association that I missed it, I didn’t given her daily life and we went through a period where we could have lost her”Clara regrets. However, mother and daughter agree on the need to support research.
