There are a number of sites out there which discuss and explain this disorder. Recently, a new article came up on Wikipedia:
http://en.wikipedia.org/wiki/Netherton%27s_syndrome
But the most comprehensive and accurate description is from a Swedish site:
http://www.socialstyrelsen.se/en/rarediseases/Netherton+syndrome.htm
I keep a printed copy of the Swedish article in my "Bambino medical folder" for easy reference. The illustration above has been lifted from the site.
5 comments:
Hi Karen - my name is Courtney, and I just came across your blog while searching the internet. I was happy to find it - my daughter Julia (who's 3 1/2 now) has Netherton Syndrome. We had quite a struggle when she was an infant, in particular with failure to thrive and skin infections, but she's doing much better now that's she's gotten older. If you ever want to chat, my e-mail is courtney.shell@gmail.com. Have you ever been to Ichthyosis.com? (http://www.ichthyosis.com/forum/ubbthreads.php?ubb=cfrm). It's a support chat forum for parents and people with genetic skin disorders.
Good luck!
Courtney
Hi, my name is Emily and I also have Nethertons Syndrome. I am 34. My sister also has the condition (she is 37). I would love to speak to others with the condition. I have learned to live with it now and have it under control. I am yet to met others with it. I have 2 children and neither of them have the condition.
Feel free to email me at kollers@bigpond.com.
Emily.
Hello my name is Hawa. I have a daughter called Nubah who is 2 1/2 years old and has Netherton Syndrome. Have you heard about the recent gene therapy research and do you have any information about it? I cant find a lot on the internet.
That's great that you have children without Netherton's syndrome! very brave and exciting!
I would really love to know about hair growth. Nubah had hair but it has mostly fallen out and doesnt seem to grow.also which shampoo/ceam/oil do u find best for your head. Nubah is tube fed and we are trying hard to encourage her to eat but she doesnt like anything in her mouth. She is also about to start nursery and im very worried how other children might perceive her as her skin is very red,and cream applied every two hours. She was in hospital for 15months so develpment is delayed. We are happy with how she is progressing and there seems to be know real problems so I'm sure she will catch up.
my email is tania_diba@yahoo.co.uk
would be great to hear from you
Hawa
Hi my name is Felicia and I have an 18 year old son who has suffered his whole life from netherton syndrome. He is also a leukemia survivor. I have been through so much with him. I have to other kids a 8 year little girl who is always worried and really hurt when she sees her big brother in pain. And a three year old little boy. I really would like to meet other s that know my pain. Not even the government on our island gave financial aid when we requested. it's like no one understand our lives are different.
Hi my name is Felicia and I have an 18 year old son who has suffered his whole life from netherton syndrome. He is also a leukemia survivor. I have been through so much with him. I have to other kids a 8 year little girl who is always worried and really hurt when she sees her big brother in pain. And a three year old little boy. I really would like to meet other s that know my pain. Not even the government on our island gave financial aid when we requested. it's like no one understand our lives are different.
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