We exchanged our first e-mails with great emotion. Friendships started to flourish. We shared our tears and laughter … but we are flung at the four corners of the earth and the language barrier does not facilitate our exchanges.
In the area around Angouleme, Melissa and her parents saw Cecile on the television during the Telethon. For 14 years, they too had been alone with Cutis Laxa. They managed to get a letter to us. Cecile was in hospital when she learned that she was not alone in France anymore, and she cried tears of joy.
In Brittany, Tifenn also saw Cecile and gets in contact with us. Then Nathalie and Mireille joined us after Cecile took part in the show ‘Ca se discute’ (Let’s talk about it).
At that point we were a group of 8 families (5 in France, 3 abroad), with a total of 9 sufferers. On 11th November 2001, we started «Cutis Laxa Internationale» to put to an end to the despairing loneliness of Cutis Laxa sufferers.
Today, other sufferers have joined us, in France, in the USA, in Belgium, in Iran , in Australia, etc. Others will join us, I’m sure.
Chair, Cutis Laxa Internationale
* TELETHON = French Yearly televised fundraiser, lasting 30 hours long on the main national channel, for the benefit of AFM-GENETHON