David A. - Hobart, IN - 2012
Eighty-one years ago my mother gave birth to a healthy baby boy (me), who exhibited ichthyosis. Three and a half years later my kid brother was born, with similar skin problems.
With current medical advances, the dubious status of being the oldest living soul in the Foundation for Ichthyosis and Related Skin Types (FIRST) data base becomes more elusive, and yet more feasible as I am very healthy for having lived eighty-one years since birth. I take no statins, blood thinners, or cortisone and the like; only vitamins, glucosamine, and various lotions to alleviate dry skin. Perhaps I will elude the appointment with the funeral director for a long time yet.
My kid brother’s birth is a story of parental courage and optimism in the deepest part of the great depression. Our mother, was a social worker in Chicago, long before equal pay for equal work became an idea. Our father, a professional civil engineer was paid what at that time may have been referred to as “minimum wage” to adjust restaurant gas burners’ primary air supply for combustion, traveling by public transportation to starting point and from end points. Rarely were his skills in bridge design part of his pay packet.
Ichthyosis treatment has changed little in the past eight decades (or perhaps millennia). Primarily various greases, creams, lotions, with varying amounts of aloe or keri, have continued. Some oatmeal soaks helped for a short time. Trial and error, expensive versus cheap have been equally ineffective in “curing” the disease. Both of us (my kid brother and I) have survived.
Until a FIRST seminar during September 2011 in Chicago, I thought ichthyosis affected males only. Several of the attendees were female. My illness is mild compared to some attendees.
I did not realize that excessive ear wax is a side effect of ichthyosis; participants use safety pins to remove it. Another participant purchased a side loading clothes’ washer hoping to save the planet. His service man said that next time the washer needs de-greasing, it would cost $250. The participant promptly purchased a top loader.
Perhaps I will patiently amass years to achieve “oldest ichthyosis sufferer” (if there be such a classification) in the FIRST data base; perhaps not. In any case, I enjoy life and will continue to as long as my health keeps up.
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.