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Hi I’m new and want to chat to people going through what I a
Hi I’m C and I found out I had myotonic dystrophy type 1 when I was 19. Im now 25 and when I was 21 I became pregnant the hospital offerd me a CVS test but it was 50% misscarage so I said no. Thay told me my baby will be born fine. May 2009 my daughter was born not breathing floppy and lifeless. Her legs where bent up to her head she was emergency c section. A week later she was tested for MD and she had congenetial myotonic dystrophy type 1. She is now 21 months old she can’t talk walk feed herself or sit up unatented she still on baby jar food as he swallowing was affected and for the first 5 months of her life feed by NG tube. I want to meet and talk to people with MD and also people with chrildren affected to. Love X little lady C X
Re: Hi I’m new and want to chat to people going through whatHi C,
Welcome to Talk MD! You have come to the right place
I have probable Ulrich Congenital MD, diagnosed when I was 6. I am nearly 33
and like many on here, find this forum is brilliant for sharing and learning about other people’s experiences of MD. It is a place to vent, to make friends, find support and give support when you read something and think “Been there!”.
At TalkMD we are growing in membership all the time and it is great to have you on board too. It sounds like you have been through alot of testing times over the last few years, you and your daughter. I can’t imagine what it must be like from a parents’ perspective but there are other members who are parents. Feel free to post, chat away, and enjoy the forum.
Best wishes
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
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