Story about Darier's disease .

New year's baby

Apr 4, 2018

By: Charlene

Year Condition Began: 1953


My mother was rh positive my father was rh negative and I wasn't doing the things that a fetus should be doing in utero. So, mom had an xray and the xray machine was good old army surplus left over from WWII in Germany-way too much exposure to radiation, which resulted in a gene mutation and the formation of Darier's Disease which manifested itself when I was about 2 with a crusty chin which the German doctors thought was poison ivy. Slatherings of Calamine lotion which is unusual because this was January. My hair or frog fuzz was platinum blonde and natural curly and it didn't really come in until I was about 3 and a half.
We came to America-dad got transferred and the scruffy skin got worse in the summer and the doctors thought it was heat rash or a strawberry allergy.
Had a nice realllllly old doctor who knew exactly what I had. He prescribed what was available at the time. Coal tar based greasy, gloppy creams. My brother called those days my "on the road time" I did smell rather asphaltish.
The only thing that really worked back then was soaking in a swimming pool for hours.
I had a normal childhood-was a ballet dancer from age 5 until about 20. Graduated college, worked in advertising, had art gallery shows. At age 27 I was chosen to do an Accutane protocol at the Cleveland Clinic. I got to fly once a week to the clinic and was given the medication. It was horrible-the side effects were so severe and the theraputic benefits didn't outweigh the side effects, back to square one. So, just keep comfortable, heal and take the antibiotics. Tried laser resurfacing-ouch! did it 4 times-I could have bought a Ferrari with the money it cost. The effects lasted about a month and I lost my eyebrows. Now I just take my antibiotics, use Noxzema and good old Petroleum jelly and don't rely on cow urine, Scottish seaweed or strange diets and certainly not hypnotism or any other chanting or meditation, it may work for some;but, not this New Year's baby.
Story about Darier's disease

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


A Darier's disease interview

View interview


Is Darier's disease hereditary?

Is Darier's disease hereditary?

History of Darier's disease

What is the history of Darier's disease?

Darier's disease diagnosis

How is Darier's disease diagnosed?

Darier's disease diet

Darier's disease diet. Is there a diet which improves the quality of l...

What is Darier's disease

What is Darier's disease

Darier's disease cure

Does Darier's disease have a cure?

Latest progress of Darier's disease

What are the latest advances in Darier's disease?

Darier's disease symptoms

Which are the symptoms of Darier's disease?