The Ichthyosis Board
  General Discussion
  Curth Macklin/Ichthyosis Hystrix??

Post New Topic  Post A Reply
profile | register | preferences | faq | search

UBBFriend: Email This Page to Someone! next newest topic | next oldest topic
Author Topic:   Curth Macklin/Ichthyosis Hystrix??
kristi3360
Member

Posts: 50
From:Pearl, Mississippi United States
Registered: Sep 2000

posted May 21, 2001 11:01 PM     Click Here to See the Profile for kristi3360   Click Here to Email kristi3360     Edit/Delete Message   Reply w/Quote
My son Hayden has Ichthyosis Hystrix/Curth Macklin type Ichthyosis. I was just checking to see if anyone else out there has had a diagnosis like this. Would love to hear back from someone that also has this form.

IP: Logged

Laura Phillips
Administrator

Posts: 424
From:Detroit, MI
Registered: Aug 2000

posted May 22, 2001 08:29 AM     Click Here to See the Profile for Laura Phillips   Click Here to Email Laura Phillips     Edit/Delete Message   Reply w/Quote
Well, I have lamellar myself and I'm afraid I don't know anyone with ichthyosis hystrix/curth macklin type. You've started me really thinking, though! I don't know a thing about ichthyosis hystrix...I don't know what other forms it's similar to, what treatments would be good/bad.

Hopefully someone who also has ichthyosis hystrix will read this and reply (maybe who either just found this bulletin board or just hasn't posted before).

Here's my other thought: Are you a member of FIRST? Have you contacted them and asked them to help you contact others with ichthyosis hystrix? FIRST has a great support network (that's growing every day) and may be your best bet (other than meeting someone here) for getting connected with someone.

It's so helpful to find other people, but especially other people who have exactly the same type of ichthyosis. Best of luck in your search,

Laura

IP: Logged

kristi3360
Member

Posts: 50
From:Pearl, Mississippi United States
Registered: Sep 2000

posted May 24, 2001 10:13 PM     Click Here to See the Profile for kristi3360   Click Here to Email kristi3360     Edit/Delete Message   Reply w/Quote
Thanks for your reply, Laura! I am a member of FIRST. Thanks for asking. I was just posting my son's type of ichthyosis to see if there is anyone else out there with the same. Maybe I will get some response!

IP: Logged

pjaira
New member

Posts: 2
From:
Registered: Jun 2001

posted June 06, 2001 10:39 AM     Click Here to See the Profile for pjaira   Click Here to Email pjaira     Edit/Delete Message   Reply w/Quote
My 13 year old son has ichthyosis hystrix/epidermal nevus syndrome. We have found very few other people with this condition. We adopted him at age 15 months. At that time he had a very small medium-brown spot on his stomach and the rest of his skin was normal. The nevi have spread and darkened considerably since then. They are most prominent on his neck, chest and groin. He has tried various therapies, including laser surgery, but opted to do nothing further at this point. I'd be happy to give you further information about his experiences with this condition if you like.
Kate

IP: Logged

All times are ET (US)

next newest topic | next oldest topic

Administrative Options: Close Topic | Archive/Move | Delete Topic
Post New Topic  Post A Reply
Hop to:

Contact Us | Ichthyosis Information

2000-2005 Ichthyosis Information All Rights Reserved.
The posts on these forums are copyrighted by the originator
and held by Ichthyosis Information and may not be reproduced
in any manner without permission of the originator.


Ultimate Bulletin Board 5.45c

In loving memory of Emil Pfisterer