I just emailed my mom about this thread. Both of our parents are West Siders. My mom quilts for Project Linus and my MIL has a very good network of doctor friends and church friends that all know about her raising my husband with EHK. Now her grandsons both have it, too, so they know all about that. She does a lot of prayer vigils and stuff.
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"