[img]http://www.ichthyosis.com/ubb/tongue.gif[/img] Hi everyone thought I share my life story with a happy note. I am so happy I met such wonderful people at the Philly conference. [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img] I feel like I am apart of a group who will make a difference with this battle we all face. I'll begin to tell you that I was born in 1972 to Greek parents who had no clue what I had.....At first I was red but as I got older (months older) my skin began to dry out on my knuckles. My mother tried many remedies including olive oil but to no avail I continued to dry up and become very itchy. As a baby my mother would ask ( even before I could talk) did I want to be scratched or patted on my back.. If I wanted to be scratched I would take my hand and nail and scratch the bed if I wanted to be patted I would pat my hand on the bed. When my mother tells me this it made me realize how much I must have suffered as a child. I can honestly say that I have blocked out all negative factors of my life the teasing, the intense staring, the dryness and itchiness....Every winter I try to remember what my skin looked like and I forget b/c I have learned to cope. I can tell that growing up was miserable but my adult years have been wonderful and beautiful. Meeting the man of my dreams and soon getting married...I have found that I have accepted this problem and I am in the process of finding new ways of maintaining it and hopefully curing it. I am teaching my self to use holistic remedies since Accutane was severe on my eyes...and will be trying new and innovating things (e.g what types of food to eat). I am in better shape today than I was a child and young adult. I am also very happy to find others who truelly understand how I feel..Especially in the morning when my skin is dry. [img]http://www.ichthyosis.com/ubb/frown.gif[/img]
I am blessed in many ways I have realized and I know that God gave me this to make a difference...and believe me when I say it has. I am more sensitive to the children who are teased and tormented and I find that I am going to these childrens rescue all the time. I know that one day we will find a cure and help all the people who suffer with ichthyosis. Thank You to all of you who I met at the conference for the new confidence and acceptance ..... [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]


[This message has been edited by sofia (edited September 08, 2000).]

[This message has been edited by sofia (edited September 08, 2000).]

[This message has been edited by sofia (edited September 08, 2000).]