April R - Elgin, IL - 2019
Pick a point in your life and write about your challenges or successes.:
In the 60's, life was different. My sister and I suffered from scaly, splitting skin. When we walked, fissures would open. Conventional lotion was never effective. In those days there was no one in our rural community that knew what it was. We suffered through gym class and were shamed for our skin. Sometimes with the darkened scales, many called us dirty. We were ostracized, shamed and tormented by bullies all our lives. Only our family accepted us as we were...and sadly even some relatives refused to allow their children to play with us. Everyone insisted we just didn't drink enough water or wash enough but, the skin was thick, yet fragile. Regular lotion burned due to the alcohol in it, and often cracked and split the skin. It wasn't until my older sister had a growth on her skin that the new hospital noticed the skin and took a tissue sample. Finally, they were able to tell my mother it was ichthyosis, but we still do not know the type. They made a cream that was roughly 1oz and cost $60.00 for my sister. My mother worked three jobs and we were very poor in those days, so often treatment was not available. The challenges for us was fitting in without ridicule - which never happened for me, trying to disguise the flaking, peeling facial skin, and walking with split and bleeding feet. Eventually, I discovered that Avon Skin So Soft (put on while still damp after the shower) helped! Sunshine was also good, but we lived in a mountainous and cold region. I took to shaving my legs although I had very little hair, but the scraping seemed to help the skin. This is how it went for nearly all my life.
How has FIRST impacted your life? I discovered by the beauty of the Internet which I did not have until 1996, FIRST!! THEY provided me with information and armed me with knowledge I had never known. They even provided occasional samples of products. Just the fact that there are others who have experienced the shame and humiliation helps me realize we are not alone.
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.