Rosalie - Age: 81 Burlington, KS
What type of ichthyosis are you affected with? CIE
What treatments do you use for your ichthyosis? I use Lanaphilic Ointment (1lb jar) with 20% Urea mixed with a 13 oz jar of Vaseline and a 9.5 oz Ponds Cold Cream. I use it after my daily baths, at night and on any part of me that's been in water during the day. I order the Lanaphilic Ointment in a 24lb jar once a year through the Medicine Shop.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? Yes, my parents used Vaseline until I was about 12 years. I used Ponds until about 65 and then needed stronger treatment thus adding the Lanaphilic and later the Vaseline. My skin was very bad during childhood, than was better until 65. It was reverting back like in childhood but the Urea product keeps it in the best shape possible.
Tell us about the challenges you face, at this decade of your life, dealing with ichthyosis. My challenges are being able to reach my entire body - I do 45 minutes of range of motion exercises a day to be able to do so. I am concerned if a nursing home becomes necessary will they understand or have time for my skin care. Another is getting into a tub to soak up and loosen scales. Another concern is availability of the products I use. I buy a year supply at a discount so I have it available when it is needed.
What seems important now that that you are older compared with what seemed important when you were younger? Comfort from heat (I don't perspire) and dryness is more important to me now. When I was younger, I had more concerns with my peers reactions and remarks and feelings of being different and inferior.
If you knew "then" what you know "now" what would you do different? I'd have liked myself and felt secure. I would have bathed everyday; having well water and heating it over a wood stove made it impossible. I would have let the taunts of schoolmates hurt less. I definitely would not have tried every way suggested to tan when I was young. There was no way I would ever have tanned with red hair and my skin! Instead I had several skin cancers in later years from early sun exposure.
What hopes do you have for the future, taking your condition into consideration? I hope to realize what I can and can't do, and to find ways to comprise. Keep educated about new things discovered and to enjoy life to its fullest!
What advice would you have for others affected? I am so thankful for FIRST, especially for the young parents to have support. My father had no support and did not know what was wrong. I didn't know until I was 38 and then was told there were only two kinds of ichthyosis, vulgaris and X-recessive. Even after visiting many different doctors, it was not until I was 60 years old that I learned I had CIE. Raising money for research helps a lot. Get in touch with others affected and KEEP in touch. Attend all the family conferences possible. I was only able to attend the one in Kansas but learned so much. If one type of treatment doesn't work try others; I realized I would have learned more by trial and error in my 81 years than I knew!
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