Just when you start cursing your skin for the various common skin complaints such as aging skin, acne prone skin, oily skin or bumpy, red skin, you read about someone who is struggling with an immense, incurable skin condition, and it really brings things into perspective. At least for a while.
I read a heart wrenching story about a little 5 year old girl who was born with a genetic skin disorder called icthyosis. Icthyosis is where the skin is red, irritated and scaly all of the time, almost looking like a bad sunburn. It becomes thick and scaly if not exfoliated every day and smothered in special creams several times a day.
And the really curious thing is that it sheds, in it’s entirety, every single day. Whereas normal skin sheds about once every two weeks, and we don’t see the obvious outcome since it does it little by little, icthyosis patients see their skin shed like this every day. The skin condition is extremely rare, as it is statistically about one in three people in every one million who have it.
When this particular little girl was born, she was encased in a sheet of her own skin, so apparently the condition begins right from birth, and is gestational in nature, occurring right in the womb and having to be addressed as soon as the baby comes out of the mother’s uterus.
The person’s hands and face are the worst off, having to be rubbed down with a special cream every half hour. You can imagine how high maintenance and how life-intruding this disease would be, especially for such a little person just starting out in life who looks around seeing their friends and family not having to go through the same rituals every day.
There is no known cure for the ichtyosis skin condition, but it is known that there are a few genes that, if mutated, carry this in a mother of father and can be passed on to their infant in some cases. Since the disease is so rare, unfortunately it lacks any really big funding that is large enough to continue serious research into a cure.
Genetic research is, by it’s very nature, expensive to carry on, and when a disease is genetically contracted, that’s the only way that a cure can be found.
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