Search the web
Sign In
New User? Sign Up
dysferlin · Dysferlin Deficiency
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Message search is now enhanced, find messages faster. Take it for a spin.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
Non-dysferlin LGMD   Message List  
Reply | Forward Message #465 of 592 |
Re: Non-dysferlin LGMD

Louis,
I read recently through DNA study that 17 variations of LGMB exists. Some
over next years will be renamed.

Stephen

--- In dysferlin@yahoogroups.com, "louiseneedham21" <louiseneedham@...>
wrote:
>
> Hi I'm Louise, this is my first post.
> I don't have LGMD, but my mum has suffered with it for about 25 years now.
Interestingly, she only started to show symptoms during her first pregnancy,
aged 28. Now at 53, she is making the transition from walking sticks to
wheelchair, but hopefully she won't be completely dependent on the chair.
> I'm trying to find out more information, because my mum has one of the rare
types of LGMD where her dysferlin function is normal. It is not known what gene
mutation causes her condition, but they assume it is recessively inherited and
that me and my sister will not be affected. My aunt is just starting to show
symptoms now, at 56 and going through menopause! I was just wondering if anyone
knows anything about it, or even knows someone that has this.
> My mum has a lot of muscle wastage on her thighs, and when she walks her knees
bend back at a horrible angle. However, her arms don't seem to be affected.
Like most of you, she can't stand on her tip-toes and falls over a lot.
> Any information would mean a lot,
> Thanks, Louise.
>





Thu Apr 16, 2009 6:54 pm

luv2cruz49
Offline Offline
Send Email Send Email

Forward
Message #465 of 592 |
Expand Messages Author Sort by Date

Hi I'm Louise, this is my first post. I don't have LGMD, but my mum has suffered with it for about 25 years now. Interestingly, she only started to show...
louiseneedham21
Offline Send Email
Apr 15, 2009
11:16 pm

Hi Louise, What your mum and aunt suffer from sounds exactly what my grandfather suffered from. They didn't have a diagnosis for him back when he first...
DeejLouise
Offline Send Email
Apr 16, 2009
12:13 am

Hi Donna, Thanks for replying so quickly! You're the first family I've heard of who are dysferlin-positive as well, and it sounds like you have similar...
Louise Needham
louiseneedham21
Offline Send Email
Apr 16, 2009
9:27 am

Louise, I live in Iowa, USA. You are also the first family I've come across that has what I have. Doctors just know that I don't have dysferlin deficiency and...
DeejLouise
Offline Send Email
Apr 19, 2009
8:30 pm

Hi Donna, I guess I assumed that having children made things worse because my mum started showing symptoms at her first pregnancy, and they got worse after her...
Louise Needham
louiseneedham21
Offline Send Email
Apr 19, 2009
10:21 pm

Louise, I can understand your paranoia about being suspect of your pains. Take comfort in how rare this is and that it is a recessive trait not likely to...
DeejLouise
Offline Send Email
Apr 20, 2009
2:09 am

Hi I have Miyoshi type LGMD and am now 40 for starters! My symptoms started in my early 20s. I married at 23 and i have two kids which I had at 30 and 33. I...
Suzanne Croft
craftycroftyuk
Offline Send Email
Apr 22, 2009
9:05 am

Hi, Suzanne Thank-You so much for your posting, I am now 31. My symptoms also started in my early 20's. I am married with 2 children  ages 6 and 3. I really...
Roxanne Kraft
trkt04
Offline Send Email
Apr 23, 2009
1:48 pm

Hi Roxanne Our lives seem quite similar don't they? A great husband, 2 lovely kids, a job in the health sector, supportive friends and colleagues. We even...
Suzanne Croft
craftycroftyuk
Offline Send Email
Apr 26, 2009
10:53 am

Our lives do seem similar. I think thats pretty cool! May God continue to give us strength to do our daily activities though out this week. God Bless and have...
Roxanne Kraft
trkt04
Offline Send Email
May 4, 2009
4:26 am

Hello, This is Casey 30. I can still walk with pain with my Dysferlinopathy. When I was reading the post it made me think about one of the most interesting...
bowieinc
Offline Send Email
Apr 24, 2009
5:59 pm

wondering why dint test this procedure in humans with muscle disorders. http://www.reuters.com/article/scienceNews/idUSTRE53E4WJ20090415 ...
MATHEW anas
vlacas2002
Offline Send Email
Apr 25, 2009
6:09 pm

Louis, I read recently through DNA study that 17 variations of LGMB exists. Some over next years will be renamed. Stephen...
luv2cruz49
Offline Send Email
Apr 17, 2009
9:05 pm

Hi Louise   I was reading your post about how children have affected people with lgmd. I have 2 boys one age 11 and the other 4  I really didn't notice much...
patty martinez
pattymartine...
Offline Send Email
Apr 21, 2009
3:47 am

Hi Patty, Before posting on this group I hadn't heard of any other family who have the dysferlin-positive type LGMD. I was trying to find an explanation as to...
Louise Needham
louiseneedham21
Offline Send Email
Apr 21, 2009
2:26 pm

I'm so sorry that as a child you had to carry the guilt of your mothers physical condition.  My children don't know why this has happened but my older son has...
patty martinez
pattymartine...
Offline Send Email
Apr 21, 2009
4:47 pm
Advanced

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help