Journal Volume 1 - January 2006
Article 59
| Support Groups:
France Roland and Pascale ERHEL Family Erhel lives in Chantepie, in Brittany, west of France. We have two daughters : Aurélie, aged 14, and Coline, 9. Coline was nine months old when Transverse Myelitis occurred, it was during summer 1997. She was just beginning to stand up in her playpen, but she would not be able to stand up anymore…. We had never heard about “Myelitis”, and we knew nothing about this disease. So, naturally we began to seek information about it. In 1997, I didn’t know how to use a personal computer; I never had the opportunity to work or play with this kind of material. It was the very beginning of Internet in France, and I rapidly realised that I could find there the information I was looking for. So I learned by myself how to cope with a PC, how to go on Internet, and finally how to construct my own website. I found a great deal of information about TM on the TMA’s website: scientific articles, many testimonies from persons concerned with TM. All of this information was extremely precious for us, desperately short of information about this infernal disease which terribly affected our poor little baby. We found there information, but also an incredibly warm support from Sandy Siegel, the Chairman of TMA, who became, month after month, and year after year, a so precious friend of ours. I built a new site in March 2004, more attractive, with numerous pictures of Coline and us, with new articles in French, useful links and a new chapter in which I put a selection of mails I received since 1998, including e-mail addresses of all these people, in order to enable them to get in touch with each other. From time to time we have contacts by the telephone, and we also have met families at home, thanks to this website I try to keep up to date as much as I can. That is the only work I do for the TM community. Sandy asked me whether I could organize a support group in France, but I replied I wouldn’t; maybe it’s somehow egoistic, but I prefer devoting my free time to my own family, especially my daughter Coline, who needs a little more care than an average child. Nevertheless, I go on maintaining my website, answering to every mail I receive, and encouraging people who live the painful experience our family too has come across… Sometimes, in front of my flat screen, I feel like a night-watchman for TM victims. My website is at the following address: |