Topic Options
#27271 - 12/20/10 02:13 PM Strange for EHK?
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
Ivy's skin is extremely normal. Which I'm finding odd for EHK. But nonetheless a blessing. Her hands and feet are very much normal for palmar plantar EHK, but the rest of her body, aside from the occasional blistering, is relatively non EHK normal. She has a few patches of red dry flaky skin. Her patches start out on her belly button and arm pits but as time passes the red flaky skin moves outward and starts to return to the normal skin type. This is very perplexing to me because I thought it was supposed to stay red and flaky once it got that way. But this is a pleasant surprise. When we first noticed the "healing" portions spreading out the red skin [think parentheses of red skin around the belly button ( * ) ] we figured it was probably cycling, and sure enough her belly button is starting the process again.
Has anyone had any experience with this sort of spread/remission/cycle?
I guess because of all the gene variants it is hard to have 2 identical expressions. We feel that Ivy is truly blessed that her skin is so manageable, but it's so different from all the clinical information we read that it's perplexing.
~Lizzy

Top
#27275 - 12/20/10 10:50 PM Re: Strange for EHK? [Re: MamaH2]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have EHK and I have never cycled like that. It's nice to hear that her patches seem to revert to normal skin! If I give myself a new patch of skin, it's there forever and eventually settles into scales.
I never had it on my upper arms until I started wearing bras and never had it on my thighs til I started riding horses but once it was there, it's there forever.

Top
#27281 - 12/28/10 01:17 AM Re: Strange for EHK? [Re: Glori]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
I thought that once it was red it would stay red. But her belly is starting to cycle again. We'll keep watching it and giving thanks for what a great girl Ivy is!
~Lizzy

Top
#27282 - 12/28/10 04:19 AM Re: Strange for EHK? [Re: MamaH2]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Does she have spots? ichthyosis en confetti is caused by the same gene as palmoplantar EHK - it's a KRT10 mutation - but the mutation is on the end of the gene instead of a deletion in the middle so it acts differently.

Our boys have only cycled a couple times in their lives, and it has always been concurrent with a really bad illness. We've also seen them peel in sections, like a yeast infection in the armpit or groin or neck or something, but never a whole body peel.
_________________________
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"

Top
#27283 - 12/29/10 01:26 AM Re: Strange for EHK? [Re: Hearsay]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
Nope. No spots. At least I wouldn't call her skin spotted. Just normal with patches of red flakes. They don't seem to bother her either. She doesn't scratch or anything. I've only ever seen her chew on the skin on her hands, or pick at her feet, (which she may have picked up her father's bad habit.) But really no peel either. So, knock on wood, we're doing great. But I always feel weird telling people about EHK because I know it can be a lot worse than what Ivy has right now. So people start feeling really sorry for her and then I feel like I have to explain that she doesn't need their pity, just to be treated normally.
~Lizzy

Top


Copyright 2012 Ichthyosis Information