Sunday, May 3, 2015

Ichthyosis Awareness Month 2015

It's Ichthyosis Awawreness Month!! A month we recognize this life long disorder and come together to spread awareness. For the past few years I have hosted fundraisers for the FIRST Foundation. I contributed to "It Makes Cents to Help FIRST" and hosted two T-Shirt sales, Evan's FIRST Fundraiser, to raise donations for the foundation. This year has been very busy as our newest member was recently welcomed. So my time has been consumed with my two little miracle boys. But as luck may have it, FIRST started the RAISE Campaign to "Raise Awareness, Funds and Hope for FIRST".

So can you help me RAISE for FIRST??? Donations of any kind are the stepping stones to a promising future for those affected! For everyone who makes a donation, I will send a custom magent with the Evan's FIRST Fundraiser 2013 design on it, as a thank you! Any awareness that can be brought to ichthyosis or FIRST would be greatly appreciated!!! Feel free to share this photo! It can also be shared from our Facebookpage as well!


And how I always love to start off Ichthyosis Awareness Month (IAM) is with the facts:

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 31 years old.

-Stephanie Turner (22) is the first woman, with harlequin ichthyosis, to have children.


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