Wednesday, May 1, 2013

Ichthyosis Awareness Month 2013: The Facts

Wow it's May already. May is probably my favorite month of the year. It has the perfect weather, my birthday (this year the big 3-0!), mother's day and memorial day. It's the time of year when school starts to wrap up and summer is ready to begin. Now, I have more of a reason to celebrate this month, to raise awareness for Ichthyosis and the FIRST Foundation.

I am very grateful to everyone who has helped with my fundraisers by donating and raising awareness. It really means a lot to have all of your support and determination to help educate others. This year "It Makes Cents to Help FIRST" is back and running for the entire month. If you would like to participate please contact me at Feel free to collect some change at home, even it if adds up to $3. Every penny counts! And help raise awarness by 'Liking' the FIRST Foundation's Facebook page. Like and share stories to help make this Ichthyosis Awareness Month a success!!!!!

Stay tuned all month long for special posts regarding Ichthyosis. There is a lot going on in our Ichthyosis community and I will be sharing links to all the other great posts and videos created by other bloggers and Ichthyosis advocates. Be sure to check back soon!

Though a repeat from a post last year, the facts are still 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.

According to US National Library of Medicine, currently only about 56% of the affected babies survive the neonatal period.

The oldest person living with Harlequin Ichthyosis is 29 years old.


1 comment:

  1. Well said. I am so excited about the amount of activity already for Ichthyosis Awareness Month. Keep blogging and I will check under the sofa cusions for some spare change.