Hi Maggie, My 8 yo was diagnosed at 3. It can be very overwhelming and one of the lessons I learned along the way was not to have certain expectations of ...
We also had people confusing it with MS. I had an uncle who kept swearing that he knew someone with MD who was an older man taking medication that was curing...
Seth Fuller
sethfuller@...
Jul 1, 2004 12:33 pm
13684
Maggie. In case, you have not been formally welcomed, I would like to do that now. Welcome! I'm Adele, and my son Jason, is 19 w/DMD. Yes, in the beginning,...
Maggie, My son Josh is 3 and he has Duchenne MD as well. I agree that it can all be pretty overwhelming when you look at the long road ahead but I try to be...
SKirk81484@...
Jul 1, 2004 12:48 pm
13686
Noah And I Live in Cortland New York And Thank you all for the advice its so nice to know that we are not alone Adele <jasona65@...> wrote:Maggie. In...
I remember while we were waiting for the first visit to St. Louis Children's Hospital, I would talk to people about the possibility of DMD. Several people...
Hey, I know Cortland NY. My sister lives near Monroe and her daughter went to college there. Adele ... From: Maggie Cole [mailto:kissass_97@...] Sent:...
Hi Maggie, my son is now 15 y/o with DMD but was originally dx in 1996 but we got the final results in 1997. Yes...my uncle until this day ask how Tim is and...
This story sounds the same as ours and I guess all of us go through the same situation when it comes to dmd and the first diagnoisis. Still after all these...
Holly, I feel bad that I never have gotten around to meeting you. I remember talking to you on the phone at one time and we talked about it. Time really gets...
Hello Maggie, The answer to your question is yes you will receive a lot of advice and some of it you just have to smile politely and ignore. It doesn't get...
Hi, and welcome, Maggie. I am Johanna, mother of 12-year-old Ian who was diagnosed with DMD 4 years ago, at almost age 9. I felt very overwhelmed at first,...
Adele, can you talk Sunday or Monday (I know, it's a holiday but if you have time I could speak to you then.) All best, Sam Maddox (This is about the book...
I have Md . Its Char-cot marie toothsyndrome . I'm not a child but was wondering if it is ok to be on the list. Its hard to find people to talk to when they...
Hi. I personally don't have a problem with you being on the list. I know a few people with CMT, both young adults and older. Though most of the people here...
Hi, I'm Jen, I'm 23 and have SMA, one of the less represented groups on this list. Most members here are parents of those with DMD. I'm much more used to...
I'm Kathy and have FSH - another type of muscular dystrophy. I'm glad to know I'm not the only one on this list who doesn't have or doesn't have a child with...
One of the great advantages about the MD-LIST is that it is not intended just for the DMD/BMD cmmunity, but for the WHOLE MD COMMUNITY, no matter what type of...
NORTH JERSEY DISABLED SINGLES GROUP "Meet & Greet" on Saturday, August 8 - 12:30 pm 21 and older @ Chi-Chi's Cantina:Roxbury Mall - 275-290 Route 10 ...
Hi bp, I don't think this site would want to exclude you for not meeting some exact criteria, and I feel we should all support each other as much as possible....
Hi Jen I'm Anna have LGMD and I'm from Japan. There's another group where you'll find many people with SMA. This group is supposed to be DMD parents' group. I...
Hi Kathy Thanks Kathy I almost give up to meet here people with other dystrophies. I'm from Japan and have LGMD. I have been on a ventilator for 16 years. Anna...
Heeeeeeeeeeeyyyyyyy!!!!! Its great to see that other people can read that all 43+ diseases are very much welcomed!!! This group is not singled as only one is...
Roger, It sure is nice to know there are good men who know when to be there for there wife. Most men I hear about can't even handle there childs dx so I bet...
The group name is "md-list" and the group description refers to "Muscular Dystrophy", not to any one specific muscular dystrophy. I've always seen this list as...
Roger, that is only 350 that is register with the MDA but there may many many more out there that is NOT registered through the MDA. There are many who have MD...
