Nathalie Rihouet, journalist for France 2 (TV channel)
«Up until a short time ago, Cutis Laxa was what is called an ‘orphan disease’. Known cases were so rare that no research could be started. There was nothing else sufferers and their families could do than to try and live with this condition, totally isolated.
This condition was known to be genetic in origin and it could be just about described : loss of elasticity in conjunctive tissues. On the outside, the symptom is a lax skin … but all organs can be affected.
Cecile suffers from Cutis Laxa. For ten years, her parents, her family, tried to fight against her fate, without any help or support, be it from the state or any scientific source. This was the situation until the day Cecile’s face appeared on (French) TV screens during the Telethon. Her condition was thus publicised and presented to a great many people. So much so that other Cutis Laxa sufferers recognised themselves and made themselves known : 9, then 10, then 11…
Today, this disease is no longer ‘orphan’. Cecile and the others have managed to break the isolation that for so long imprisoned them.
That’s the first victory !
Thus an Association was set up. Today, it has brought together 485 sufferers and their families, from Australia, Korea, Japan, Liban, Iran, Mexico, the USA, Argentina, Brazil, the Netherlands, Belgium, Northern Ireland, Germany, Great-Britain, ……… and France. However, for these Cutis Laxa sufferers, how many others are unaware of the origin of their disorder, get no information and hide from other people’s gaze ?
Research has now started, but as in every other fight, the sustaining element is money !
This disease can be the fate of any child yet to be born.
No one is exempt.
Thank you for helping us to fight Cutis Laxa. »