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#16862 - 07/13/06 03:59 PM newbie
pollybundle Offline
Junior Member

Registered: 07/09/06
Posts: 3
Loc: Scotland
Hi ,sorry just found out that there was a whole different discussion forum for this sort of condition, so some of you might have seen me in one of the other pages, so sorry if you have read it again.

Introduction - My name is Gail and am married to Michael and we both live in Scotland

My husband was born with Bullous Ichthyosiform Erythroderma (BIE) or as sometimes called (Epidermolytic Hyperkeratosis). He is now nearly 32 years old.

He is the middle child of 5 and no one else in his family (even going back generations) has had any sort of similar condition. He has been for numerous tests and operations and lots of research has been carried out. Unfortunatley we have not been told anything of any outcomes of this research.

We are currently awaiting IVF at a hospital in Dundee. We have been told that there is a 50% risk of passing the condition on to any children that we might have. Although we have been told that they are looking into a test that can be done while the baby is still in the womb to test for this condition, but that (like everything comes with its own risk).

If anyone has any advice or knowledge of this condition I would be pleased to hear from you. My hubby has had no support in anyway with regards to a group that maybe meets once a month etc or something on the same lines. So any contact would be received warmly.

Please feel free to email me gailgreen5@aol.com anytime you wish.

Gail x

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#16863 - 07/14/06 02:10 AM Re: newbie
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Gail,

First, congratulations on your marriage. I read one of your previous posts and it sounds like you might be newlyweds. I am 36. My hubby, Mark, and I have been married for 10 years. We have three precious and beautiful children (Sophia, 8. Harrison, 5 and Evan Paul, 1)

Little Evan has EHK. My biggest piece of advice would be to contact FIRST (www.scalyskin.org). They can connect you with support people and/or mentors. I am 99% sure they have a good sized international group going. EHK is quite rare. It sounds like your husband's case is like my son's, a mishap during creation. The medical community called it a spontaneous mutation, but I do not like that lingo.

Best Wishes to you and Michael. Feel free to e-mail me privately (kimmayone@juno.com)

Ciao.
Kimberly

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