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#28996 - 08/15/13 11:19 AM I'm so excited!
GeenasMom Offline
Member

Registered: 09/24/04
Posts: 9
Loc: Annapolis, MD
I'm a 60 year old woman with Ichthyosis but never knew exactly what kind of Ichthyosis. Yesterday I learned I have Keratoderma hereditarium mutilans (Vohwinkel's syndrome). Its funny, its kind of liberating to actually know what kind although I have no idea why LOL. Anyway, wondering if anyone here has this kind? I'm told its quite rare.

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#28997 - 08/15/13 03:30 PM Re: I'm so excited! [Re: GeenasMom]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Hi, Geena!!

You're pretty close to me! My spouse has an apartment up in DC and I'm in Richmond. We should get together sometime!

I'm glad that you have a diagnosis. Was it done via genetics or via biopsy? There's a guy up at Yale looking for different ichthyosis mutations. If you're interested, I'd be glad to pass on his contact info to you.

Are you on Facebook? There is a pretty active forum over there...most of the users here tend to just chat there because it is more convenient. I'd love to hook you up!

Also, have you been in contact with FIRST?
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#28998 - 08/15/13 10:25 PM Re: I'm so excited! [Re: GeenasMom]
GeenasMom Offline
Member

Registered: 09/24/04
Posts: 9
Loc: Annapolis, MD
hi Jennifer - Diagnosis was by biopsy. Never realized I actually cared what type I am until I found out. Its an interesting feeling, quite liberating LOL.

Geena is actually my daughter ... I'm Pam, hence the handle GeenasMom. And yes I'm on FB and I "just" requested access to friends of ichthyosis page. I have 2 grown kids none of which have ichthyosis. Hope to see you there.

Never heard of FIRST ... guess I'm learning late in life.

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