I'm so excited!

Posted by: GeenasMom

I'm so excited! - 08/15/13 11:19 AM

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.
Posted by: Hearsay

Re: I'm so excited! - 08/15/13 03:30 PM

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?
Posted by: GeenasMom

Re: I'm so excited! - 08/15/13 10:25 PM

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.