Thank you!! I am familiar with the jain foundation. How fortunate
are we to have such an amazing advocate on our side? With the
support of my family we are trying to find every way possible to
minimize the effects of this disease if not reverse them. Yes, I am
new to this disease and am filled with hope of "curing" myself. I
refuse to let this disease take over. I am trying vitamins and
physical therapy at the moment. Have you found or tried anything to
help with the effects of LGMD2B?


--- In dysferlin@yahoogroups.com, "Lary Lumpkin" <lary.lumpkin@...>
wrote:
>
> 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.
> >
>