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...
Hello Brad, and everyone, I am an 18 year old female, whose doctor said that she is pretty sure I have Limb Girdle, type 2 (I guess). I know she said Limb...
Yes, I am working (part time, currently) at the Jain Foundation. I think you must be mistaken. No, I'm not a father, but I do know of several patients who are....
Hi Lindsey, Thanks for writing--I set your permissions so you can post without approval (I set things that way for new members as an anti-spam protection). I...
What are the steps to have my blood tested for mutation by Jain Foundation? Also, does anyone have information regarding hand controls in cars? Thanks, John...
Hello Everyone, Josh Thayer here, a 42 year old MM patient from Boston. I am a new member, though I have communicated with Brad (our moderator) some over the...
I'm 24 and have real trouble with stairs and getting up from chairs. I will be getting married in about 2 years. She is aware of my problem but I'm afraid...
Thanks, and I don't mind you asking at all. Right now I am somewhat burried at work and want to give a thoughtful response, so I'll get back to you and the...
Hello everybody! My name is Lisa and I am from Sweden. I was diagnosed with LGMD 2B in October 2006 (with help of a muscle biopsy). In December 2006 I took a ...
Dear Lisa, My name is Laura and I work for the Jain Foundation, a non-profit foundation in the US that is dedicated soley to helping find therapies for LGMD2B....
Hello Lisa (and Laura): First of all I want to apologize for my poor English. I`m writing you because I have a similar case to yours. I’m from Spain and 10...
Can anyone please tell me if they have had any success in the treatment of Limb-Girdle 2B. Does physical therapy help? Does a vitamen regime help? We are...
I was diagnosed at age 18 when I first started to notice signs of this disease. I am 24 now. I have Miyoshi Myopathy which is the other type associated with...
Thank you so much for replying. We first noticed a few signs when our daughter was 20 but they came so slow, then all of a sudden the symptoms worsened and she...
Unfortunately, I have a bad habbit of not following through on things...I haven't taken those two items long enough to really notice a difference. I should be...
Hello Karyl, I haven't heard of anyone being treated for LGMD 2B at the Mayo Clinic. Could you share with us what approaches are being used? I'm currently...
Marian: After the preliminary diagnosis at a local hospital, our daughter was given two choices of locations for treatment for LGMD2B. The two choices were...
Hi, my name is Samantha and I was diagnosed in March of 2007 with LGMD2B at the age of 24. I first started showing signs of weakness at the age of 20 but...
Hello, my name is John The funny thing is I am originally from Minnesota. I now live in Arizona and have met no one with my condition here. I too am 24 years...
Hi, my name is Miriam.. I am from San Francisco, about to turn 21 years old. I started to notice signs of weakness during my senior year in highschool as well....
Hi I'm Suzanne, from Surrey England. I'm 39 now but started my symptoms back in my early twenties. I just wanted you to know that it's not the end of the...
Thank you for posting Suzanne, really good to hear something positive. I've just turned 30 and may want to have children myself one day... so I would be really...
