Hi
I am really freaking out and need a hand hold please.
DD is 6 mo and was at the doctor for something totally unrelated and he commented on her cafe au lait birthmarks and counted five. He asked me If I had any and I said yes, quite a few! He them referred her to the genetisct and mentioned NF1 which I had never heard of.
Cue google when I got home and I am now in a real state. Not only do i have two of the criteria for a diagnosis (6 cafe au lait spots bigger than 15mm and underarm and groin freckling) but i also have à couple of fatty lumps under the skin which GP had said were lipomas but could be wrong and they could be neurofibromas.
How can i be 40 and never diagnosed! I also counted 4 cafe au lait spots and saw underarm freckling on 3 year old DS.
I am in a mess, not only do i have à genetic disorder I didnt know i had but I have very probably unwittingly passed it on to my two beautiful babies. I have spent too much time on google and am horrified at how severe this disorder can be. I feel like i am living in the middle of a very bad dream. I cannot sleep for worrying what is going to happen. Its a,very unpredictable
isorder and can vary wildly in symptoms between family members.
I know none of us have been officially diagnosed yet but enough criteria is there. It is really getting me down and I cant stop thinking about it.
Does anyone have any experience of NF1 or how i can get my head around such life changing news?
Thanks xx
Here are some suggested organisations that offer expert advice on special needs.
MNHQ have commented on this thread
SN children
NF1 / Neurofibromatosis / Cafe au Lait Spots - help :(
theonlyoneiknow · 31/01/2013 20:46
This reply has been deleted
Message withdrawn at poster's request.
This reply has been deleted
Message withdrawn at poster's request.
Don’t want to miss threads like this?
Weekly
Sign up to our weekly round up and get all the best threads sent straight to your inbox!
Log in to update your newsletter preferences.
You've subscribed!
To comment on this thread you need to create a Mumsnet account.