Casey, I first noticed I couldn't tip toe two years ago, I was 37. My Calves are mush and the muscles on the top of my legs are too, but only on the front...
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...
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...
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, 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...
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, 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...
Just out of curiosity, what do you tell people when they ask questions? I know responses differ depending on how well you know the person asking the questions....
Hi Donna, I was just reading your posts about how to tell a curious person without going into details etc. This is funny because for me, i start to feel like i...
When people ask about my mum I say 'it's a muscle-wasting disease', but it depends who they are because some people are really curious and want you to explain...
Hi in response to the posts I have just come to realize very quickly how nosey and mean some people can be,but then I have learned that it is maybe because of...
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...
Hi, I think this is a really interesting and important topic, i.e. how we talk about our experiences with this disorder and how other people see it. These...
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...
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...
Hello everyone. I haven't posted in a while and I always get nervous when I do. I guess because I'm afraid I can't convey what I would like to. With that in...
Bex, I'm not the only one!! Yes I have a boyfriend but I feel that if I am in a wheelchair, it would change everything! including him, and i know that i do not...
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...
Hi Louise, I'm in Cambridge, UK, though I'm American. My partner and I are living here for a while. I'm trying to get an appointment with Dr. Kate Bushby's...
Hi Marian, Yes I know her! I am studying a masters degree in medical genetics, and Kate Bushby has given us a few lectures. Also, my mum has had a few...
Hi Miriam, Really glad you found it useful :o) Good to know I'm not the only one too! Think our fears are natural, just finding good ways to deal with them is...
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...
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...
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...
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...
an article in an Ontario paper. http://www.thedailyobserver.ca/ArticleDisplay.aspx?e=1571497 clinics in Dom republic and china? i thought cheese are hoaxes. ...
an article in an Ontario paper. http://www.thedailyobserver.ca/ArticleDisplay.aspx?e=1571497 clinics in Dom republic and china? i thought these are hoaxes. ...
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