Hello all, my friend's 16 year old son has been told he has Marphan's. We live in Pensacola, FL and she is having trouble finding good Dr.'s and support...
Tell her to call the Marfans Foundation they should be able to recommend someone in her area, if no one is in her area, maybe she could make a once a year road...
Has anyone heard about the "soft back brace" that is adjustable?? I caught a glimpse of it on TV, but I'm unable to find anything on the net..I know it...
Sorry to hear that your daughter is getting worse. As far as the brace goes am not much of a tv watcher but I know for a fact that you can go to some...
It probably is important that you get her involved in a low impact exercise program. A very good exercise program for us is non-competitive water exercises,...
1-800-8-Marfan. they will answer ANY questions they might have. Great organization from the little exposure I have had thus far. Request the packets of...
Havent heard of soft braces but Brittany has worn a boston brace for 2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and his improved with...
Hopefully the messages from the last 6 months or so will reappear - I'm trying to find answers. If anyone knows more about Yahoo groups and has an idea I'll...
Hi, Could someone please explain the 'chat' to me...I am a newbie on this list and don't know if you just post to the list or if there is a place I have to go...
... 2 yrs and it hasnt helped. Surgery next year. Her brother is 14 and his improved with growth. ... low impact exercise program. A very good exercise...
... just wanted to share my experience with the boston brace....i fractured my sacrum two years ago...after months of agony the dr told me to try the boston...
... the ... (Jemma) is ... Back Braces??? Here's some info. www.spinecorporation.com And here's the video http://www.nbc4.tv/video/4656127/index.html You might...
Thanks for the info...that is the bit I saw on TV..I just couldn't remember when or where. I will check into a physical therapist for her..I have also heard...
I thought i would look and i have a couple of web sites for non rigid back braces for scoliosis well at least one and perhaps this will lead to others. Hope...
thank you very much!! "If you don't like something change it; if you can't change it, change the way you think about it." Donna Bohlar-Schroeder 979-480-3774 ...
Well I excerpted a few lines from the web page BUT it came from a site called yin-yang colonics. I am not sure this is something that you would want to pursue....
Thank you for sharing. I have recently been faced with having to make the choice on whether to go ahead an get my entire aorta replaced immediately or to wait....
Hi Tabitha, I can so appreciate the thoughts running through your mind right now. Some people do not have to be on coumadin for their entire life (such as...
agrees with talking to your doctor...alot.....about the wonderful world of coumidan.. Not to make things sound even scarier for you, but speaking as a person...
Hi Tabitha, I think coumadin makes any procedure more difficult. I can not give you advice about heart surgery. What you need to consider is the rate of...
My nephew had his valve replaced during the summer of his senior year of college. By the time school started in the fall he was ready and able to carry his...
Hi Just trying to figure out where you have this chat to. i went into the link section under emergency chat but no one was in there, can someone pls assist me...
Yahoo is no longer supporting chat rooms. We are using Yahoo messenger. Please IM iowamarf or veldaroyce for the evening chats. Tuesday afternoons will...
Hi everyone, I'm fine. Just wanted you all to know I havn't deserted you my computer is down temp. But I do have a friends I'm using. I have a question. I went...
Deborah, I know what you mean on the doctor incompetence. YESTERDAY, Friday, I called my Primary Care physician to get them to write me my perscription for...
Hi great to hear from you. Wow that must have been such a surprise for you. I was fortunate i was diagnosed even though i was what they thought to be a...
For those who get messages in your email, this is a duplicate. For those who read on-line it was only on the board about an hour at the most so I'm reposting...
At least this guy was so blatantly stupid it was obvious that he was an idiot. As a result, you knew under no uncertain terms he was a loser, to your credit,...
