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





Photobucket

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

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

    ReplyDelete