Terry - State College, PA - 2008
Ichthyosis Through the Decades - 50's
Terry -- Age: 53 State College, PA
I am affected with epidermolytic hyperkeratosis (EHK). As the daughter of an academic dermatologist, I have an epic history of treatments including experimental ones (from a young age): vitamin B12 shots (1960s); urea ointments, methotrexate, plasma infusions (1970s); propylene glycol under occlusion, accutane (1980s). My treatment now consists of ammonium lactate lotion once per week followed by a late afternoon soaking, exfoliating bath. Otherwise I maintain with a daily shower with lots of suds (Dial) and Lubriderm and Eucerin.
My ichthyosis is much improved over when I was younger, though it is not clear whether this is due to just getting older or just getting smarter about how to deal with it. Basically, the long flat surfaces are clear and the flexural areas are the most affected. Whereas I always seemed to be on oral antibiotics when I was younger, I now treat all infections early with Bactroban ointment. A great product!
My primary challenge with aging has been the effect of drying cold air, since I live in the Northeast. My older skin lacks flexibility, and I wish now that I had protected its elasticity with more sunscreens when I was younger. Younger FIRST members, take note! I love rainy, wet weather, but as soon as the temp drops below freezing, I can feel all moisture fleeing my body. It's always a challenge to find the happy balance between dry skin and greasy clothing.
The social challenges of a disfiguring condition have virtually ended for me. I have a loving husband and two adopted kids-adopted to avoid more EHK in the family-and a successful career. I rarely think about my skin, and if one thing appears true, it's that the less I think about my skin, the less other people think about my skin. With the social challenges of dating, education, and career development over, my focus is on how I can remain healthy for many more years. I do believe that keeping my weight down is beneficial for my skin, as well as staying flexible with exercise. I walk on the treadmill everyday. This keeps my heart healthy, which means my feet and ankles don't swell and blister as much in hot weather. I try to live my life so as not to regret the path not taken. I seriously doubt I would do anything different if I had to do it over again. Maybe I would have gone without long sleeves and long pants more often, because although I was always self-conscious, I've learned over time that people are not cruel so often as just curious. I've been fortunate to have a supportive family and friends all my life, and am looking forward to a healthy old age, traveling and gardening in retirement, and bouncing a few grandchildren on my knee!
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals 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.