Charlene's interview
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How did all start?
When my mother had an xray when she was pregnant with me. The German doctors used army surplus xray machines and didn't get the dosage right-so, my gene mutated due to being over radiated.
Do you already have a diagnosis? How long did it take you to get it?
Got the diagnosis at age 6. Another at age 27 for a drug protocol.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Laser resurfacing, Accutane, every cream on the market both OTC and prescription. A few unusual so called remedies such as cow urine, mutton tallow, sea weed baths and an all oatmeal diet.
What has been the most useful thing for you so far?
The laser resurfacing lasted about a month-clear skin.
What have been your biggest difficulties?
Infections
How has your social and family environment reacted? Have your social or family relationships changed?
Not at all. I graduated college. I didn't get married until I was 52.
What things have you stopped doing?
Trying every new so called cure for Darier's and no more laser.
What do you think about the future?
Finding which gene causes Darier's was a big step forward, now finding a cure will be wonderful if possible.
So far, which years have been the best years in your life? What have you done during them?
The last 15, I got married and am doing what I enjoy-drawing, sculpting, laughing with my husband.
What would you like to do if you didn’t have your condition?
Have nice eyebrows and nails.
If you had to describe your life in a sentence, what would it be?
She's an intelligent, witty artist who never let anything or anyone stop her.
Finally, what advice would you give to a person in a similar situation?
Find whatever works for you.
