Samantha - I'm glad that you're a part of this group. It's always
comforting to learn that others experience the same things. On a
personal note, my wife and I have a 15-month old son and a 3-yr old
daughter. Although in a powered chair, I still have tons of fun with
them. Just before I left the house for the office this morning, my
daughter was climbing all over my chair, tickling me, etc.

On a medical note, there are really no "treatments" and definitely no
cures at this time. Most people focus on minimizing fatigue,
concentrating energy on the most important parts of each day rather
than getting from point a to point b, maintaining flexibility/range of
motion, etc. However, there is a ton of research underway involving
some potential treatments/cures that are promising. If you haven't
already, please check out this website
http://www.jain-foundation.org/. Their sole purpose is to find a cure
for Miyoshi/LGMD-2B. They are very well funded, and, in my experience,
the most knowledgeable dysferlinopathy experts anywhere. I find
comfort knowing that if a potential cure surfaces, they will know
about it, and therefore I won't miss out.

I've been dealing with this disease for 15 years, so I'm no stranger
to the challenges. Let me know if I can answer other questions.

2 Cor. 12:9-10

Lary

--- In dysferlin@yahoogroups.com, "samanthasmith7" <hushfire777@...>
wrote:
>
> Hi, my name is Samantha and I was diagnosed in March of 2007 with
> LGMD2B at the age of 24. I first started showing signs of weakness
> at the age of 20 but contributed it to a car accident I was in where
> I was ejected out of the vehicle. I got pregnant in March of 2006
> and had a complicated pregnancy. I was about 5 months along when I
> started noticing that I was getting weaker. I had problems getting
> up the stairs without using the handrail. My daughter was born in
> December and within 3 months it became nearly impossible to get up
> the stairs or getting up on my tip toes. I was referred to Mayo
> Clinic in Rodchester, Minnesota where I have had every test
> imaginable to confirm my diagnosis. Now, almost a year after being
> diagnosed I am finally coming to terms with it. I've been extremely
> angry and incredibly sad about being diagnosed with such a disease.
> I worry about being able to do things with my daugher, now 14
> months, and her and my fiance having to take care of me in the
> future. My family and I have jokingly called me an "ostrich"
> because I have not wanted to face this. So until recently I have had
> no interest in trying to get better, no matter what the method may
> be. As a result, I am already a stage weaker. Now I am really
> scared.
> As many of you have found, not much information is available on this
> disease, what makes the process slower, or what "cures" it. It is
> also near impossible to find someone who has it. That is why I am
> so happy to be a part of this group. I can't wait to speak to
> someone, anyone, who is going through what I am and to hear what
> kind of things you are doing to treat this disease.
>