Noonan Syndrome (NS)
Support Group Introductions
Pearton, Amanda (as of 5/97)
Hello Everyone. I am a new subscriber to your list, I have been 'listening in' for a little over a week now. It is great to read all your supportive and encouraging comments. Loved looking through the photographs in the gallery of stars, all their personalities shone through.
My name is Amanda Pearton and my four year old niece, Hannah, was diagonised with NS at about 18 months. Since that time it has been a difficult path for her parents, Tamara and Warren, searching for > information about NS, all too often there have not been any answers. Hannah lives in Tasmania which is a state south of the Australian Mainland. I believe Hannanh is one of only three children diagnosised with NS in Tasmania so understandably the medical profession there have had little experience dealing with NS.
I was really excited to come across your group, hoping that I may be able to pass on some information to my sister that will provide some insight into her concerns. I've already printed out many e-mails and sent them by snail mail (Wanda, I finally found out what snail mail meant) to my sister, she has found them really useful. I live on the mainland of Australia in the city of Melbourne, it is about an hours flight from my home in Tasmania so unfortunatey I don't get to spend as much time with Hannah as I would like.
Hannah has a wonderful personality, she is so loving and giving. Walking has been a major achievement for her, but still after 12 months her balance is very poor. The slighest bump sends her for a fall and with it her confidence also falls. She has started going to a school for children with special needs one day a week in preparation for the hope that she will be able to be integrated into a 'mainstream school'. Does any one out there have any thoughts/suggestions/reading that may be helpful for my sister in preparing Hannah for school?
The dermatologists have also recently diagonised Hannah with a condition called Keratosis Pilaris Atrophicans Facies (ulerythema ophryogenes), I think it's commonly referred to as 'blocked sweat glands'. Hannah's hair growth has been very slow and has resulted in patches of baldness over her scalp. The doctor indicated that Hannah's hair will not grow anymore in fact she will probably lose the hair she already has. Has anyone experienced this conditon and once again any suggestions?
This is turning into a long e-mail so I had better conclude. I hope it's o.k to ask questions so early.
Bye for now, my thoughts are with you all........Amanda
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