Meet Esther
Date: 04/01/2012
I live in Nairobi, Kenya, East Africa. I am 36 years old, a committed Christian, and I have epidermolytic ichthyosis. I have two siblings who are not affected with ichthyosis.When blisters began to erupt on my skin when I was three months old, my parents and doctors did not know what was wrong or how to treat me. I spent my childhood traveling to different hospitals with my parents, hoping for answers. I experienced blister eruptions that were very painful. It was also painful for my parents to watch their child go through this pain.
During my school years, I missed large periods of school because I was in the hospital as doctors tried to manage my condition. Extreme temperatures were unbearable for me. When it was too cold, the painful blisters would erupt. When it was too hot, the itching was unbearable. My family and I tried a variety of treatments including Chinese medications and homeopathic medicines. Nothing seemed to work.
It wasn’t until I reached college that I finally had a diagnosis of epidermolytic ichthyosis. The diagnosis was difficult for us to hear, as we had hopes of finding a cure.
I rely on my strong Christian faith and loving, supportive family for strength during the difficult times. I learned about FIRST while using the internet several years ago looking for more information. When I reached out to Moureen in the national office, I received a kind, caring email that was encouraging. FIRST provided me with a network of support and a host of literature that I have used to begin developing a support group in Kenya for those affected with ichthyosis.
I feel that I have learned so much about ichthyosis, and myself, through my dealings with FIRST.
Thank you,
Esther
Nairobi, Kenya
East Africa
