Even as a very little girl I had the feeling I was not like the other children.. My first school year confirmed it. From then troubles started, questions raised, and feeling of injustice appeared. My mother is also suffering from Cutis Laxa. Our discussions about this issue were very difficult. She didn’t know anything about the disorder, she was undiagnosed, but she didn’t want to hear about it anymore. We just had to live with it.
Anyway, she took me to many doctors and consultants. Each time we had the same answer :
We don’t know anything about this disorder. Some of them guided us to dermatologists , but the answer was still the same. The only words of comfort we received were, and I quote : “ Each one of us has his cross to bear, some have a big nose, and you have wrinkles,…….” !!!
The hardest thing to live with when you suffer from this disorder is the others’ gaze, the children’s mockeries, even the adults’ ones…….. and the fact that you cannot live a normal childhood, and then youth. You are automatically and involuntarily thrown into the adults’ world. You miss one of the steps of your life….. the one which, normally, is the most beautiful, the one where you can be thoughtless, where you can meet others.
When I was a child, I was called oldie, grandma, witch, etc. Later on, as I grew up, it became more subtle, but as hurting as before. When suffering from Cutis Laxa you must always justify yourself, at school, at work, everywhere you have to answer the question : How old are you? Each time you must show your identity card to be trusted.
I don’t know if other people realise how much they hurt with their questions, and most of all their insistent amazement. How hard it is to justify oneself without the name of the disorder, knowing mostly nothing about it.
Finally, one day of 2001, I saw Cecile on my TV screen, during the Telethon. I cannot explain what my feelings were at that moment. I had thought my mother and I were the only ones in the world suffering from this unnamed disease !! and there on the screen it was just as if I was appearing myself, as a little girl. I knew, at once, it was the same disorder. I got in touch with the AFM and they gave me the name and address of the Boiteux Family. Thus, I finally was diagnosed by Pr Stalder in Nantes (France).
Today I know my disorder. I am still learning how to live with it, with ups and downs, and with my worst enemy : the mirror.
Besides all this, I just live like anyone else. It doesn’t stop me from beaming, having friends and a beloved husband who helps me a lot in accepting my disorder.
Now another question occurs. Having children when we know there is a 50% risk for having a suffering child. Can we take the risk to inflict this disease ? Is life worth living anyway ?
16 May 2006
“What a wonderful week-end…
Being able to see each other, at last, differently than on photos, and most of all, to share our experiences, our lives with a great understanding and a lot of emotion.
Learning, thanks to the speakers, about our disorder, about the progress of the research and concretely understand that we are not forgotten, that research is progressing. Learning how important it is that everyone gets involved , health professionals and sufferers. I also learned that we must respect and be tolerant of every person’s choice and thought patterns.
During this week-end, I felt particularly relaxed, good about myself, because I knew I was with people aware of my disorder. I did not have to justify my age, my difference and that is truly valuable. That is why it is important to get rare disorders known, to help us live more easily because I think that it is through information that we will change other people’s gaze and clumsiness.
This week-end will have done me so much good, emotionally ; I go back home “boosted”, more self-assured, and also more motivated to invest myself.
After such a week-end, goodbyes are, there again, full of emotion. We think about all that we have lived alone, then we think about our first meeting which put an end to isolation. Leaving also means saying goodbye to very close friends and this goes beyond mere words as the link between us, these genes, in a way, imply that we all are members of the same family..
This is why Cutis Laxa Internationale must go on, together…for us, but also for all those who will need us. May they have the chance, like us, to find a family.”
Paris 10th May 2008
Each time we meet again, each time we meet new families, is always full of great emotion. We look at each other, we hug each other, we do not need words to understand the great intensity of feelings.
The Information Day was very interesting. The speakers were very friendly, clear and human. I appreciated a lot when Dr Bodemer spoke about the need for the patient and his/her family to have psychological care.
I was pleased to hear that for some sufferers psychological care is necessary, whatever the severity of the the disorder is. As far as I am concerned, I often heard : « There is worse than you, you can live with it, it is not vital and you do not have that much » ; no, I just look 20 years older than I am, but in this Society where everything is based on appearance and youth…..easy to say……. I’d like to see these girls/women who cry at the first spot on their nose or the first little wrinckle appearing (sorry, I needed to let off steam). Of course there are cases more difficult than others, I agree, but there are no degrees for insults and mockeries.
To my opinion, feelings and moral pain, especially when you are a child, are the same.
In short, my disorder has always been trivialized, minimized and my uneasiness rarely heard and understood. That is why I cried a lot when hearing Dr Bodemer speech. I felt as if she was saying all I “swallowed” for years : « You have the right to be suffering, it is not nothing, you have the right to be heard and helped ».
Nathalie’ speech, very harrowing, weel said, always with a tinge of humour.
What a life….. What a strength too. There also a lot of emotion….
I liked it so much when she said : “I will not walk with a placard telling my age, who I am, what I am suffering from ». However that is what we would be willing to do. As for me, I often thought about doing it. We would want to say : I am young too, I am like you. In fact it is like if we were shut inside someone else and we would love to be seen just like who we are and not like the image given by the mirror.
Ethics issues were very hard and making the choice to have children or not……… Of course it refers to our stories………..
That is why our voices need to be heard, that is how we will change others’ gaze. As I often say, there is more tactlessness than nastiness ; people are nasty when they do not know.
So once again thank you Marie-Claude and all the others for the energy you spend for the support group. Thank you for helping us out of isolation, to allow us to meet each other. It is thanks to your dedication that research improves and that we can keep hoping for us and for our children.