Thank you for posting Suzanne, really good to hear
something positive.

I've just turned 30 and may want to have children
myself one day... so I would be really grateful to
hear about the effects of pregnancy on the disorder
and vice versa. Does anyone have any
information/experience?

Thanks

--- 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.
>
>
>
>



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