Pick a point in your life and write about your challenges or successes.

On the 9th of Sept 2014, I received pictures of my nephew who lives in Kenya. I remember looking at the pictures and feeling absolutely overwhelmed and helpless. I had never seen a skin condition like this. I was devastated. I had never seen him in person since I live in Europe and his condition was undiagnosed for almost four years.  I knew I had to do something but was not sure what. I went online and started researching on skin conditions. I happen to have a deep interest in medicine and love watching medical documentaries. What a surprise it was when I picked to watch the story of Francesca Tenconi! There was hope for my nephew. I felt hopeful and optmistic I would get help which we desparately needed. I emailed the Childrens Skin Foundation and got an email reply within minutes. They told me from  what they can see he might be suffering from ichthyosis. I had never heard of this name before. They told me to get in touch with FIRST who might be able to help me. A few minutes later I received an email with your link. I stayed up almost the whole night educating myself on this condition. I felt a sigh of relief realizing there is help out there and other people who suffer from the same condition. It was a challenge knowing this is a genetic condition which would not disappear thru medication.

How has FIRST impacted your life?

Positively! Thru the information I received, I felt empowered, knowing I could share skin caring tips with my nephew's mum and encourage her and has had a very positive impact on his healing. The donations we received were utilized to seek medical attention from a professional, we see positive changes! Thank you so much for your support.

What's Your Story? We'd Love to Hear It!




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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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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