CUTIS LAXA INTERNATIONALE
We are starting a great story..............................All together.
Welcome Legal Information Homepage What is it ? Research Worldwide Health Professionals The Association
Newsletters Aims and Projects Join Us Stories Laws and Social Rights The Diary Associations and Links
Patronages Press Release Photos
Previous Français Deutsch Español Next
For each one of us, life is full of Joy and Distress. Cutis Laxa brought in sufferers’ and their families’ life very strong times : painful, sad, hard , but also happy, full of hope. Each one’s life is a unique story, but also the universal story of those who suffer from rare or orphan disorders, with its difficulties, its wandering for a diagnosis, its moments of discouragement, its physical and mental pains. Some of us want to share their stories with you, go and read also the speakers' and participants' testimonies on 5th Cutis Laxa Days in Annecy 2016 and here below you can read the Story of Our Association.
Life is also made of meetings. One of them is very important for us, especially for Cecile : A little girl called Megane. Read the story of this great friendship.
Cecile was born in October 1990. For the first two years of her life, there was not anything at all indicating that she was suffering from a rare genetic condition. However her dad, Jean-Louis, thought her skin was not quite right, too soft, too lax, as if somehow it was too big for her body. So, Jean-Louis and I decided to consult a dermatologist (skin specialist).
Fortunately for us, we knocked on the right door at the Hopital Saint-Louis in Paris. There Doctor Mrs Blanchet-Bardon did not hesitate for a second, her diagnosis : Cecile suffers from a rare genetic disorder, Cutis Laxa. Once we’d covered all the medical issues, we asked if we could meet other sufferers.
Unfortunately, at that time, Cecile was the only case Dr Blanchet-Bardon had come across and there was no association concerned with this condition. We faced the unknown alone, unable to share with anybody all the upheavals this disease brought into our lives. What of our daughter’s future? What difficulties would we have to confront? No one who could help us outside of the medical circles. These were tough years, during which we had to learn to live with the gaze of others and teach Cecile to be strong in front of this gaze. All our attempts at getting in touch with other sufferers through various organisations were in vain. However, within hope was still alive that may, some day …
10 years have now gone by since Cecile’s birth. The TELETHON*, which we watched loyally from its beginning, set up its cameras on the Ile de Re where we live. It was an opportunity for us, and especially for Cecile, to participate more fully, more concretely than in the past. She took part in two documentaries where her dynamism and love of life exploded on the screen. Cecile’s proven motivation pushed us to start looking again for other sufferers. We had not long bought a PC and thanks to the internet I finally found two cases of Cutis Laxa (1 in the USA, the other in Japan) mentioned on a US site for family contacts( MUMS : http://www.netnet.net/mums). I could not believe my eyes. Finally, we were not alone anymore. Stimulated by this discovery, I visited other sites and found another case in Northern Ireland (Contact a family : http://www.cafamily.org.uk).
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.
Marie-Claude Boiteux, Chair, Cutis Laxa Internationale* TELETHON = French Yearly televised fundraiser, lasting 30 hours long on the main national channel, for the benefit of AFM-GENETHON