hi everybody, my name is bryan. i'm 24 and was diagnosed with miyoshi myopathy earlier this year. still trying to figure out what it all means. i feel pretty...
Hi all, I wanted to introduce myself. I have Limb-girdle, not really sure what type it is. I was diagnosed at age 7, had a biopsy at age 12. Needless to say...
I was wondering if anyone in this group knows any information about current diagnostic tests available for LGMD type 2B. I've read that there are a number of...
Hello, I just wanted to thank everybody who responded to my email posted in August. I may have been very slow to reply, but I greatly appreciated everybody's...
Hello everybody, I'm so relieved to find a newsgroup dealing with dysferlin deficiency. I'm very interested in what others are going through. Thank you Brad,...
Hi yall, Children's Hospital in DC, which has a large and reputable research center, is going to be studying DNA sequence/mutations in the dysferlin gene. I'm...
Hi everyone. I am glad to find this group, and I look forward to swapping thoughts, questions, info back and forth. The main thing I want to address is rate of...
Hi everyone, An article has just appeared in the scientific journal Nature which reports some very interesting results on the dysferlin protein. The ...
Hello all (esp. Lucinda), Because of recent efforts to get a DNA analysis of my dyferlin genes--not to had currently, unless anyone knows otherwise (if so, ...
Hello, I just found out that a member of our family is diagnosed with Miyoshi Myopathy. How can I help? __________________________________________________ Do...
Thanks Brad for the very helpful information on diagnostic testing. I've been wondering if anyone in this group has had a similar experience of rate of...
There are 8 presentations and one discussion workshop on dysferlin in the program for the upcoming Internatioal Congress on Neuromuscular Diseases in July...
A friend of mine, Ricardo Rojas, has proposed establishing Sept. 17 (the birthday of Dr. Guillaume Duchenne, who gave the first clinical description of the...
I'm posting this message for natalisan, who is currently having internet connection trouble :-( The decrypthon acts as a sort of screen saver, to have your...
Dear sophareth and all, Ok, to avoid all confusion, you can call me Nat all ( shorter, et cuter than Phalevi, duh?) Just checked the scheme in the photos...
Dear dysferliners, I've posted in the group bookmark a few links which might interested some of you about MD infos. One of them is the URL of the dysferlin...
I've decided to activate the "moderater" feature on posting messages. Most people recieve all the postings as e-mails (you can change this under the options...
Thanks, Brad. I think we do need you stepping in. Not that I get all that much mail from the group, but it's a bother when it's a repeat or a spam attack. ...
Hello all, :) Hope you're doing well. Someone asked me about the decrypton, so I thought you might be interested too. This is my 2 cents about it: In France...
Dave, May I ask you what form (Miyoshi distal form / LGMD2 B form) of dysferlinopathies you have? Concerning books references, I don't think being helpful...
I would like to further my education in this matter. I am an avid reader and would like suggestions on what to purchase. Technical manuals will do little for...
Since there have been a few questions about appropriate physical therapy from time to time, I thought I'd let you know that there will be a chat on this...
Does anyone have the stats concerning the number of folks in the US with dysferlinopathy ? Just curious . I emailed the MDA and they actually referred me to...
Hi, Honestly, I don't know if real statistics incidence or prevalence focused on dyferlinopathies were studied. It may be a research subject still going on,...
Hi everyone, May I ask all of you what you think of this clinical trial and the use of steroid? And If you are familiar with "deflazacort"= Calcort* ? I would...
I came across the following trial of the steroid Deflazacort which is being investigated in Germany in patients with dysferlin deficiency. Deflazacort is also...
Hello everyone, Hope you all are doing well. My doctor has sent a request to Dr. Vinter at UCLA to have my muscle biopsy tissue sent to Dr. Hoffman at the...
Just thought I'd give an update on the leg. I got home a week ago and the leg seems to be healing nicely, according to the most recent x-rays the orthopedic...
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