An article in the news today. http://www.emaxhealth.com/2/24/31564/stem-cells-stimulate-muscle-regeneration.html All About: General Health Articles Submitted...
Thank you for your post Mathew, this is the most promising report I've seen! Early days obviously, but still... Bex ... Thank you for your post Mathew, this is...
Soon we all be strong as Belgian bulls... http://www.acceleronpharma.com/content/news/press-releases/detail.jsp/q/news-id/116 Unfortunately no webcast. ...
Hello Everyone I have only just registered. My sister is 35 years old. We live in Ireland. She has experienced weakness in her leg muscles for the past number...
Hi Liam, Thanks for writing. I've changed your posting privileges so that you can post from now on without approval. I'm sorry to hear of your sister's...
Hi, Based upon my analysis of the disease (source being various groups/sites), lack of dysferlin affects only the fiber muscles. I don't think it does affect...
Hi, my name is Elaine. I am 35 years old and from Ireland. I am Liam's sister, who has also joined this website. I hav e had myopathy for the last 10 years...
Hi Elaine, I'm glad that you and your sister found this discussion board! If you check the archived posts I think you will find very many descriptions by ...
Elaine, Hello, my name is Christina Ray and I live in Broken Bow, Ok. My symptoms started when I was 37.(May of 2007) I first noticed that I couldn't tip...
Hi Elaine It's always comforting to fing people a bit nearer to home with similar circumstances. I'm in Surrey, England. I am 40, married and have 2 young...
Hi Elaine, I too am a patient of Dysferlinopathy. I come from India (age 27), the problem started at the age of 21. It was previously detected as Mitocondrial...
I think I have Myoshi dystrophy and have recently started experiencing more knee joint pain. Interestingly this has come on since I started driving again. I...
I also have miyoshi myopathy. I am 57 and for the last 28 years I have been walking with knees hyperextended to keep my balance. I have been having pretty bad...
Hi, This is Subhash, my wife has diagnosed with Dysferelinopathy. I have heard that some stem cell treatment is giving to the MD patients in India. Doctors in...
Thanks for your message Kimberly. It's really good to know that you are still walking with Myoshi. I'm 31 now and seem to be progressing/degenerating...
Enter your vote today! A new poll has been created for the dysferlin group: How has your dysferlinopathy progressed? o Myoshi: Steady linear progression o...
dysferlin@yahoogroups...
Jun 30, 2009 7:37 am
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Hi Subhash, Thanks for giving me a call. As I discussed with you on phone, the doctors at AIIMS didn't advise me to go for Stem Cell therapy (8 months back). ...
Hello everyone. I just wanted to write and let ya'll know that I sent my blood off Monday to have the Genetic testing done thru the Jain Foundation. Hope...
hello everyone, quick question: I have been registered with the Jain Foundation but have never contacted them.. so i was wondering how you got in contact with...
oh, I was going to save anyone the trouble and add the link for the Jain Foundation https://www.jain-foundation.org/index.php  Jennifer Millican    ...
Hi Miriam, I've asked Esther Hwang and Laura Rufibach, the two people at the Jain Foundation who co-ordinate testing, to get in touch with you. Insurance is...
I just wanted to thank everyone for their quick and helpful responses, it seems that Esther Hwang was trying to contact me and I have just heard from her now...
Miriam, Fed Ex quoted me a price of approx. 70.00 to have my blood samples sent to France.  I live in Oklahoma and the price may vary depending on where you...
At least you know that you can have them come to you. Have a great Day, Christina Christinabelle ... From: Jennifer Millican <millicanjennifer@...> ...
Hi everyone, There is a new clinical study of LGMDs (which includes all clinical forms of dysferlin deficiency, including Miyoshi) is being ocnducted at...
I have already started the process for this. They need you to have your genetic test done and would like to look at muscle biopsies and such as well. The...
So glad I found this group. Only this week, after years of pain and weakness on my legs I received the diagnosis of LGMD B2. It's important to learn from...
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