Thursday, May 3, 2012

Ichthyosis Awareness Month- Week One: The Facts

Here are some facts about Ichthyosis:


There is no cure for Ichthyosis.

Ichthyosis affects people of all ages, races and gender.

Ichthyosis is not contagious. It is caused by a genetic mutation in 1 of 40 genes that make up the skin.

- Ichthy comes from the Greek root meaning fish.

Some form of Ichthyosis affects more than 16,000 babies each year.

There are more than 28 forms/types of Ichthyosis.

Hearing and vision impairments are associated with those affected by Ichthyosis.

Ichthyosis Vulgaris is the mildest and most common form, accounting for about 95% of the cases.

- Serious medical complications are associated with most forms of Ichthyosis including dehydration, infections, blistering, overheating, and rapid calorie loss.

The FIRST Foundation is the only patient advocacy organization in the country funding research for a cure.



Facts about Harlequin Ichthyosis:

Harlequin Ichthyosis (HI) is very rare and the most severe form of Ichthyosis.

HI affects maybe 1 in 1,000,000 people.

Each parent has to be a carrier of the mutated gene but show no signs of Ichthyosis.

An HI infant is born with plates of skin that crack and split apart leaving the body susceptible to life threatening infections.

At birth, the eyes and mouth are forced 'inside out' due to the tight plates of skin.

The ears of an HI infant may appear to be misshapen or missing, but are fused to the head by thick skin.

In the past, this disorder was always fatal but due to improvements in care it is now possible for an HI infant to survive.

The oldest person living with Harlequin Ichthyosis is 28 years old.



Someone got glasess



HELP FIND A CURE by going to www.firstskinfoundation.org





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2 comments:

  1. My sister, Lauren Kocher (her son is little Calvin on facebook), introduced me to your blog. It is so inspiring and a great way to raise awareness.

    Your son Evan is always in my prayers and I think he is so handsome. I love his new glasses on him, very sophisticated. :)

    Love,
    Julie Tanner

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  2. your boy will grow up strong, I know a boy, Tyler, has the same thing hes in his early twenties and goin strong

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