Hello Crystal and Julene
Welcome to our ichthyosis bulletin board and our ichthyosis family.My name is Les Avakian and I am so happy you found us.This is a wonderful website and place where we can ask questions, give advice,and share experiences what it is like to have ichthyosis.At one time or another, I think all of us have felt we were the only chosen ones to have this disease, only to find ichthyosis people is in every continent throughout the world.Crystal, I looked up Ichthyosis bullosa of Siemens and found it is very rare and represents a mild subtype of EHK.It appears to be due to a different keratin gene defect than EHK.Have you contacted our ichthyosis foundation FIRST at (215)631-1411.They have very good information on ichthyosis and the Ichthyosis Support Network might be able to put you in touch with other Ichthyosis Bullousa of Siemens people.If you have time, we meet in the ichthyosis chatroom on Wednesday nights, 9:00 P.M. eastern, 6:00 P.M. pacific time. We would love to have you join us. Take care Crystal and Julene, by for now.
Your central calif. ich friend,