THANK YOU!!! THANK YOU SO MUCH!!! I am crying now just reading what
you have wrote. I thought that there was light at the end of the
tunnel, now I know there is. I had no doubt that me and family will
cope with my disease. It is just nice to know that dispite a
disease, it can still be wonderfully normal. Thank you for the
inspiration!!!!!


--- In dysferlin@yahoogroups.com, "Suzanne Croft"
<joesuzi.croft@...> wrote:
>
> Hi
>
> I'm Suzanne, from Surrey England. I'm 39 now but started my
symptoms back in my early twenties. I just wanted you to know that
it's not the end of the world, even if it is a pain in the butt
sometimes! I have two lovely children, aged 5 and 8. I work part-
time still, keep house, take the kids to school and pick them up,
and get them to all the football, dancing clubs they belong to. I
also love to go out to pubs & restaurants with my family or friends.
I've been married for 16 years and have the best husband!
>
> At home I have a stairlift, bathlift, toiletseat lift and ramps.
I get around indoors using a crutch and furniture to steady myself.
Outside I use a manual wheelchair because I want to try and stay as
fit as I can. I have a hoist so I can get it in and out of the car
myself. I've also got a small mobility scooter which i use for
family walks and taking my son to football!
>
> People always say to me, "I don't know how you do it?" or "you
always stay so cheerful" but it is just part of my life & you have
to get on with it. There are worse diseases around! My kids are a
big help too. It's no big deal to them... I'm just their Mum!
They've grown up with me being disabled and I think they're quite
proud that their Mum is a little different from the others!
>
> I went through all the same "why me" feelings and emotions (and if
I'm honest, I still do on occasions) but please, please, please do
not let it beat you and ruin your life.
> ----- Original Message -----
> From: samanthasmith7
> To: dysferlin@yahoogroups.com
> Sent: Sunday, March 02, 2008 8:50 PM
> Subject: [SPAM][dysferlin] My Story
>
>
> 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.
>