.jpg)
CUTIS
LAXA INTERNATIONALE
CUTIS
LAXA INTERNATIONALE
We are starting a great story..............................All together.
Welcome Legal Information Homepage What is it ? Research Worldwide Health Professionals The Association General Meetings Newsletters Aims Projects Join Us
Stories Laws and Social Rights The Diary Associations and Links Patronages Shopping Press Release Photos Our Actions
Previous Français Deutsch Español Next
Christine Bodemer Martine Devillers Cyril Pailler-Mattei Pascal Sommer
“Living with not only one Rare Disorder but ….. two…….”
Nathalie Fournier, doctors told my parents not to get attached to me as my life expectancy was only 10 days.
Diagnosis : Osteogenesis imperfecta (glass bones syndrom) + Cutis Laxa : Two different kinds of pain : physical with OI and psychological with CL
Then I spent 4 years in hospital, skin samples taken without any anaesthetic ( “Fresh flesh”!!!!!), several fractures = several trials = guinea pig..
1976 :
As doctors kept on being always after my “case” and wanted to try a nth surgery, my parents refused it and decided to take me out of hospital and bring me back home.
Public School did not want to assume the responsibility to welcome me, so I entered a Private School at the age of 6. I have been greatly welcomed there.
1982 :
Last primary schoolyear, a tibia surgery to strengthen them with metal. I left the “ Palavas Torture Centre” after 5 months of « therapeutic » relentlessness.
My parents said « Stop » the day I had 2 ribs broken during an Xray and doctors wanted to do a surgery on my spine. They told my parents they were “not cooperative” !!!!
1984 :
I entered school. The board of school inspectors wanted me to entered a special school for disabled. We had to fight for me to enter a “normal” Public School………. Like everyone.
I was quite good at school, but, as reaching teenage, relationship problems with boys started :
My first boy friend had his face smashed in for being with me !!!!!!!
I slowly became aware of how difficult and complicated love life would be for me.
1989 :
Once again we had to fight for me to enter technical school.
The board of school inspectors said there was no place for children like me.
But I was very lucky. The headmaster decided and assumed the responsibility to take me in his high school. I passed my vocational training certificate and diploma « Communication-Administration- Secretarial work ».
I was 19.
Amicable relationship during my teenage and youth : I was the good friend who could help with schoolwork, but regarding parties………I was never invited.
Searching for a job : I never had any positive answer …….
The COTOREP (Technical Committee for Careers Guidance and Redeployment) acknowledged me as 80% disabled.
My only income is the AAH (Allowance for Disabled Adults)
1993 :
Despite my parents’ love, the emptiness of my life was too heavy. I decided to move from Vaucluse where I was living to Charente where my cousin was living.
There I started getting involved in the associations’ world.
September 2001 :
For the first time, on TV, I hear people talking about Cutis Laxa : Cecile’s report in the broadcast « Let’s talk about ».
I get in contact with the Boiteux Family. They tell me they know of 5 other sufferers in France and 3 abroad. They want to set up an association and I agree at once.
Even if I do not “work”, I am very sprightly. I am member of the Accessibility Commission for Buildings receiving public in Charente and member of the Board of Directors of the Sports Association for Disabled in Angoulême. I took part in the group working on the Local Plan for Disabled People in Charente. And I am also Cutis Laxa Internationale’s Secretary and its official representative in Rare Disorders Alliance . Each possible time I attend Cnferences, Congresses and Fora to which CLI is invited.
Loneliness, having no partner and , now that I am 36, telling myself I will probably never have a child, are today my greatest difficulties.……