This message if for those members that are suffereing from dysferlin deficiency and have been diagnosed with Miyoshi or LGMD2B I run a family foundation that...
Thank you to those of you who have taken the time to register on our website. Some of you have experienced difficulty in registering and we are sorry. The...
Thank you to those of you who have taken the time to register on our website. Some of you have experienced difficulty in registering and we are sorry. The...
I need to put the word out to anyone who has not yet registered with the Jain Foundation. I spoke with Plavi Mittal, PhD for quite awhile today, she is a...
Hi everyone, Let me add my words of encouragement to all patients to contact Plavi. I have known Plavi for several years, and we have exchanged information on...
Hello to all group members, I encourage anyone who has not already done so to register with the Jain foundation. http://www.jain-foundation.org The foundation...
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 ...
