prada willy syndrome

5 replies

Krythia · 03/09/2006 19:06

I hope I have spelt that right - a friend has just had her second and he has PWS. Does anyone here have experience of this? If so I will encourage her to join mums net so she can get some e-mail support. Thanks guys.

OP posts:

bluebear · 03/09/2006 19:15

It's spelt Prader Willi - just in case you want to google it. I have no experience of it, but wish your friend all the best.

macwoozy · 03/09/2006 19:21

No experience but I remember seeing a documentary about this, for your friend.

Davros · 03/09/2006 19:29

If she's ready to come on here she might find it helpful. There is certainly lots of info, advice and support that makes sense whatever a child's disability. She may not be confident enough yet to set foot in the "disabled world", it can take a lot of time to feel ready. I don't know if there are specific support groups, charities or EGroups for PWS which she might feel more comfortable with at first. If she does want to come to MN then I know we will try to make her feel welcome and treat her gently.

eidsvold · 03/09/2006 22:31

I have a friend who has a little one with Prada Willi. I can contact her and ask if she would agree to be in email support for your friend if you like??

Original poster

Krythia · 04/09/2006 19:23

That would be amazing if you and she wouldn't mind. Many many thanks even for the suggestion

OP posts:

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