Hi Rebecca. I have a little knowledge about this disease and how it
effected me during my pregancy. I had a slightly complicated
pregancy. I started to go into premature labor at around 27 weeks
and my daughter was 3 weeks early. But she is extremely healthy. I
probably could have gone years without knowing I had MD if I hadn't
gotten pregnant. From what my doctors have told me, your body
produces a hormone that loosens and stretches the muscles to prepare
your body for childbirth. Obviously, that has a negative effect on
someone with our disease since our muscles do not repair as others
would. However, it wasn't until after my daughter was born that we
found out I had LGMD2B. I believe that if I do decide to have
another child I will know how to take care of myself better so that
I don't get weaker from pregancy.
One thing I do know, is never in a million years would I hestitate
to have my daughter if I could do it all over again knowing what I
know now.



--- In dysferlin@yahoogroups.com, Rebecca Read <rebeccajread@...>
wrote:
>
> 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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