My Story: Living with Ichthyosis
My name is Esther and I come from Nairobi, Kenya, East Africa. I am 31 years old, and a committed Christian. I have Epidermolytic Hyperkeratosis (Bullous Congenital Ichthyosiform Erythroderma). I developed the condition when I was a few months old. Neither my parents nor the doctors understood what was wrong with me. My parents and siblings do not have my condition.
We guess that the ichthyosis came from a spontaneous mutation of a gene. As I grew older my condition continued, and I continued to be taken to different hospitals and to see different doctors. It was a very painful experience for me in my childhood and especially for my parents, who could not understand what this condition was. They tried all they could to provide me with the best treatments. Blisters would appear on my whole body and it was very painful. It also was painful for my family to watch me go through the trauma and pain of this condition. I would be admitted in the hospital for months. I could not do anything for myself. I had to be bathed and fed and I missed a lot of school. I was absent for weeks in the first few years of my childhood. I did not understand what was happening to me and was confused.
The cold days were extremely hard for my condition. At that time, blisters would erupt. I had the most painful blisters and would be house-bound. The hot seasons were also unbearable and would make me very itchy. I would itch until my skin would peel off. I just needed someone or something to help me to stop the itch until my teenage years. Those were the especially hard times for me. In high school, I would also miss classes because of the painful blisters, but my condition was starting to get adaptable. All this time the doctors would not diagnose my condition.
Many said the condition would disappear as I grew up, but many did not have the right diagnosis. They thought it was a general skin condition. They prescribed lotions and creams, which did not really work nor improve my condition. I also tried herbal medication, Chinese medication, homeopathy medication, but none seemed to work.
After high school, when I went to college, I met a person who sponsored me to go to Scotland for medical attention in 1996. That's when I met a dermatologist who did a biopsy on my arm and gave my condition a name. That's when I knew the name as epidermolytic hyperkeratosis.* He told me it was a genetic condition and there was no cure and they are still doing the research for the cure.
I suffered from depression in my high school years and stress in my college years. I always had low self esteem, but in time I have become a confident woman. Now I am happy, intelligent. sociable, and I enjoy life to the fullest.
I came back home in 1998. It was extremely hard for me and my family when I was told that the condition was genetic, because we had a lot of expectations for a cure.
In time, I had gotten used to my condition, and now it has gotten a bit better because I don't itch or have blisters anymore. I survive on Vaseline® and lotion to hydrate my skin. I am not on any medication; I stopped taking medication a long time ago. My Christian faith has been my anchor because the Lord gives me the strength when I feel down.
My friends and family are all very supportive and I have never felt discriminated. I occasionally meet people who give me the stares, but I understand because they are not informed of my different looking skin. Whenever possible, I try to explain to them about my condition. Many are relieved and happy to know that it is normal and not contagious.
I decided to learn more about my condition. Here in Kenya not many dermatologists know about ichthyosis or have met patients with ichthyosis. Very few know about it so there is virtually no place here where affected patients can get help. That's when I realized I had to do something. I got interested in knowing more about ichthyosis, and I started visiting different websites about skin conditions.
I learned about FIRST and I had to say it was an eye opener for me because they had a lot of help for patients like me. Since I had never met any other patient with my condition in Kenya, I thought it would be a good idea if I started a support group here. That's when I wrote an email asking for help, and I was surprised to receive a very kind email from Moureen Wenik. She is a very helpful and a kind lady. She encouraged me a lot. She started sending me posters and brochures, which were very helpful to read and to know actually there are other people like me suffering from my condition from different countries.
I really felt at home at FIRST; I was in the dark most of my life, and my parents too, about my condition. But since I started communicating with FIRST and received the materials that were sent to me. I now have all the facts at my fingertips and I understand myself better. FIRST helped me to cope and feel loved and know that I share the same feelings with other sufferers. That's why I want to support and create awareness about ichthyosis in Kenya so that we can sit and share our innermost feelings. I am single, but I still believe God will bring me a man who will love and cherish me with my condition so I live my life to the fullest.
FIRST has really made me smile again and given me a spirit of helping others. Thank you FIRST. I appreciate you for your dedication and commitment to help all affected by ichthyosis and look forward to attending the family conference one day.
Nairobi, Kenya, East Africa
* Editors Note: Epidermolytic Hyperkeratosis is now referrered to as epidermolytic ichthyosis.
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
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