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213
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...
plavijain
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Oct 10, 2006
8:22 pm
215
I"m very excited to hear about this!!! It makes me extremely happy = D ron chao <ronchao1@...> wrote: that's fantastic news. I just...
John B
bluedestin
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Oct 12, 2006
6:29 am
216
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...
plavijain
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Oct 12, 2006
9:15 pm
217
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...
plavijain
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Oct 12, 2006
9:16 pm
219
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...
amglo1
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Oct 13, 2006
5:32 pm
220
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...
baw1064
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Oct 13, 2006
5:57 pm
221
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...
baw1064
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Oct 19, 2006
4:55 pm
222
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...
ellynoordover
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Nov 18, 2006
8:08 pm
223
... 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...
ellynoordover
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Nov 18, 2006
8:11 pm
224
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...
Alfred Cabale
acabale1
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Nov 24, 2006
6:29 pm
225
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...
ellynoordover
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Nov 25, 2006
8:56 pm
226
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...
derekselectblinds
derekselectb...
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Nov 25, 2006
10:34 pm
227
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...
derekselectblinds
derekselectb...
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Nov 29, 2006
11:35 pm
228
ya, i have noticed that if I have lack of sleep my muscles feel really weak in the morning. derekselectblinds <bulldog1888@...> wrote: hi...
John B
bluedestin
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Nov 30, 2006
8:15 am
229
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...
Rebecca Read
rebeccajread
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Nov 30, 2006
10:16 am
230
Are you still able to walk normal? I need braces to walk somewhat normal. Rebecca Read <rebeccajread@...> wrote: I have found gentle exercise...
John B
bluedestin
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Dec 1, 2006
4:44 pm
231
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...
Rebecca Read
rebeccajread
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Dec 1, 2006
5:07 pm
232
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...
John B
bluedestin
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Dec 2, 2006
9:12 pm
233
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 ...
ellynoordover
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Dec 4, 2006
12:07 am
234
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...
John B
bluedestin
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Dec 5, 2006
6:53 am
235
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....
khurte
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Dec 7, 2006
9:08 pm
236
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...
AIR-COM
vlacas2002
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Dec 7, 2006
10:27 pm
237
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...
Lary Lumpkin
lary_lump
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Mar 29, 2007
5:10 pm
238
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...
bradt32233
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May 24, 2007
5:01 pm
239
... 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...
xron922
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May 24, 2007
6:16 pm
240
I have Limb-Girdle muscular dystrophy and have never met anyone else who has any kind of Dysferlin Deficiency....
Brad
bradt32233
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May 24, 2007
6:51 pm
241
ive had it for 6 years now ... _________________________________________________________________ Play your part in making history - Email Britain! ...
derek hill [select bl...
derekselectb...
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May 25, 2007
9:56 am
242
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...
Brad
bradt32233
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May 26, 2007
4:58 pm
243
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...
roberts_isabelle
roberts_isab...
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May 28, 2007
10:18 pm
244
Hi Isabelle, Sorry to hear about your daughters' diagnosis. The leading authority on dysferlin deficiency in Australia (IMO) is Prof. Kathryn North, at ...
baw1064
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May 29, 2007
1:00 am
Messages 213 - 244 of 331   Oldest  |  < Older  |  Newer >  |  Newest
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