If anyone is in contact with the woman who has a child with Goldberg Shprintzen Megacolon Syndrome and wishes to speak to a mom who has a child with the same syndrome, please contact me. My daughter was just recently diagnosed. We live in New York. In would love to connect with other families with the same syndrome. Thank you.
Just a quick note to say hi! hi sent you a pm ..you okay today ...marg
Just a quick note to say hi! Hello, I live in UK too. Sorry to hear about your daughter's illness. Hope you find support and friends here.
just wanted to say thanks for the message. it is nice to know that i can talk to someone
got it... part of myotonic... I wanted to really understand what you and your daughter are going through to better provide support :)
I am doing research right now on centronuclear myopathy and only located mitochondrial and myotonic myopathy... does it go by another name?
hi, just read some of your posts and would love to chat with you sometime. I find it that the more people you reach out to, the more valuable advice you obtain. To make a long story short, I am completely committed to making dramatic changes in my life from substance abuse, to therapy, to learning how to cope with panic attacks and GAD. I am so happy to have found this forum and just know that regardless how different your situation may seem to you, there is always someone out there that can relate in some way.
I have PMd you ....take it to Oprah in my PM I tell you how....
You are welcome well I listen ,so PM me anytime you want to chat online , we have all been through something, its good to find suport I am a better person for having found others here .
LOL keyboard at it again,I type too fast
I ahve left some infromation on your journal, you are not alone in this ,get talking about it..put it out there for answers..
Thank you for putting your daughters illness into your journal I am going to go read it to learn more,
I have this crazy keyboard I meant informative ......
Hi I have just spotted your post Dr Nicholson was very indormative yesterday, how is your daughter doing ,I must say I have never heard of this strange sounding disease, Could you write something in your journal for us all to see, hope you are well.
Welcome to our community!
Just a quick note to say hi and welcome XD