Hello All, well just thought I would post to the introductions and life stories.As some of you know my name is Les Avakian,45 years old, and I am from Fresno, Calif.I have X-linked ichthyosis and today begins another season of its affects.The temps have fallen into the mid-70`s, my skin begins to dry,scale, and the itching begins.For the next two weeks,I will be in my adjustment phase, adapting to the itching and applying lachydrin.
X-linked was passed from my grandfather to my mother to me.Also my mother`s sister passed it on to my male cousin.The family called it only dry skin and we used an assortment of over the counter cremes.When I was 10(1965)my mother took me to Stanford Univ.Medical Center.Doctors didnt know what to make of the dry skin, until a Chinese intern, Dr. Lee or Shirlee,correctly diagnosed me as having X-linked ichthyosis.She exclaimed there were many people in China who were afflicted. I was prescribed Eucerin creme and to occlude with seran wrap.The eucerin creme lasted until 1983, the seran treatments lasted two weeks.LOL.The scales dont bother me as much as the constant itching.In school, I was always uncomfortable in the cold weather months and always irritable.
In 1977, I earned a Bachelor of Science Degree in business administration and started my own electrical contracting business.The enjoyment of meeting new people on every job doesnt allow one day to be boring.My hours are flexible and I am my own boss.
In May 1982, I was watching the local talk show advertising the beginning of a central valley chapter of the ichthyosis foundation.I couldnt believe others had ichthyosis like myself.At the first meeting, I met 6 other people just like me with X-linked and one 12 year old girl with lamellar.The thrill of exchanging similiar experiences was exciting.Our first fundraiser was a garage sale,then a wine tasting and silent auction, and a volunteer bureau walkathon all to raise money for the foundation.In 1983, Dr. Peter Elias gave me Lachydrin 12% lactic acid and my life has never been the same.It smooths the scales and helps with itching.After trying all the over the counter cremes, finally something that works.In 1984,the mother of our lamellar girl married and moved to San Jose, our leader married and moved to Montana, and we lost contact.
In Jan. 1999, my nephew gave me his computer, and by chance I punched in www.ichthyosis.com
and here this marvelous site came up.I have corresponded with so many people from all over the world with ichthyosis.I have to personally thank Chris and Laura Phillips for this site and bringing me back into the ichthyosis foundation again.Well I have rambled on enough, take care all.Bye for now. Les