Hi everyone, I am very glad I found this group about dysferlin. I have allready tried to post a message after becoming a member but I am not sure if it worked...
... I just did! And I also became a member of this group because I hope I will get more information here then what I get from my neurologist. I was diagnosed...
Hello to everyone I am a 44 years old man who started to have neuromuscular weakness at 15 years old. I am married and I have my own business. I am new to this...
They took some muscle tissue for DNA research, but that is more then a year ago. I still don't have any results. My neurologist explained to me that it can...
hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve...
hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve...
I have found gentle exercise very helpful (esp. swimming). I have been surprised at how much I can do. I think the muscles that are ok are in better shape now...
At the moment, yes, more or less. People do notice that I'm wonky, have balance problems and lack strength, and obviously its getting worse, but I find it...
Walking has become difficult for me. I use toe-off braces now to walk better. I like swimming as an exercise but it is very hard for me to get out of the...
Hi Bex and others, I think we are all in different stages and we are all trying to get the right answers what to do and what is good and what isn't, but I ...
Hello Ellynoordover, The toe-up bracers are also known as toe-off bracers. I could get more info if you would like. They are very helpful. Also, I try and...
I know that the trial ended recently, but I would like to know if anyone on this site participated. I was fortunate to participate and gain some benefit....
Hey khurte. Tell us what kind of benefit. I am anxious for the second phase trial. I hope they will have a Canadian university to do the second trial to, maybe...
Hey everyone, I want to briefly highlight The Jain Foundation, an organization whose sole purpose is to find a cure for LGMD-2b/Miyoshi Myopathy. Please note...
I was just wondering how many people there are with this disorder. I know thats is rare but just how rare. I live in Jacksonville,Fl and have been living with...
... I have miyoshi myopathy and I think the incidence is around 1 in 400,000 or so. I have never met anyone else in person with the same disease, but i'd guess...
thats about how long i have had it and just last night i realized that my right hand is getting weaker. How do those of you who has had this longer then me...
hello. Ive just signed up. My two daughters aged 16 and 21 have just been diagnosed with dysferlin. our nureosurgeon doesnt know much about the condition and...
Hi Isabelle, Sorry to hear about your daughters' diagnosis. The leading authority on dysferlin deficiency in Australia (IMO) is Prof. Kathryn North, at ...
I have a son and daughter that we thought had a disferlin deficiency. They were diagnosed about 6 years ago. Son is now 27 and daughter is 22. Last year they...
My husband has been diagnosed with dysferlin many years ago. Recently driving has been a real issue with a few near accidents. I've been looking for hand...
G&L DJ SERVICE OF MILWAUKEE IS PROUD TO DONATE SERVICES TO ANT PERSON AFFECTED WITH MUSCULAR DYSTROPHY. THIS SRVICE IS LIMITED TO THOSE IN S.E. WISCONSIN ...
... Recently ... I would recommend contacting your local Dept. of Rehabilitative Services, they should be able to help. Also consult with the MDA in your...
Hi all, my name's Marco and I'm italian. I was diagnosed with MM at age of 16. Now I'm 31 and I sometimes use a wheelchair for outside while I still can walk...
Hi Marco, Good to hear from you! I'd also seen that paper. It's very interesting, but there are a few things that aren't clear. First, the patients weren't...
... Thanks Brad! Are you working working working at Jain Foundation? As a job? An other question for you.. are you a father Brad? I remember year 2000 or so...
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