Thursday, May 1, 2014

It's May! Happy Ichthyosis Awareness Month (IAM)

My motivation and inspiration to help raise awareness for Ichthyosis is all because of my precious son Evan. He puts a smile on my face no matter the time of day or mood I'm in. He is an amazingly happy child for all he goes through and I am so grateful to have him in my life. I love you Evan! You are the sweetest child a mother could ever ask for! This is all for you!

It's May!! Yay!! Ichthyosis Awareness Month (IAM)! Though I try to raise awareness all year long, this month is dedicated to those living with Ichthyosis to help raise awareness and educate others. I have been very involved with helping the FIRST Foundation by using this blog to raise awareness for not only Ichthyosis but for their foundation which is dedicated to helping those affected by Ichthyosis through education, research and connecting families.

I have been spending the past few months working on a T-Shirt sale which benefits FIRST in honor of IAM. It has been very successful and I hope to send in all of the donations asap! Let's just say I am very fortunate to have so many people in my life who are also dedicated in helping FIRST in honor of my special little man! And I pretty much sold every T-shirt I ordered which is just fabulous! Check out pictures to be posted on Instagram of supporters in their shirts using the hashtag #EvansFundraiser.

I also plan on collecting change at home during the month of May. I have done this the previous two years during IAM and this year is no different. If you are interested in collecting change to donate to FIRST please do!! I know I have already had so much support with the T-Shirt sale but a little change goes a LONG way. Every penny counts! Last year I sent in a few hundred dollars just from change collected from a handful of friends!!! You can send me a check (made out to "FIRST Foundation") after you cash in your change at the end of May and I will send in all of the donations together. Even if it's $2, it's better than nothing!!! Here is more information about my past coin collections "It Make Cents to Help FIRST". And here are a few posts about why I blog and why it is beneficial to help FIRST.

And how can you kick off IAM without sharing the facts!!! For those of you who haven't read these please do. And for those of you who have, why not refresh your memory!! 

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.

-Stephanie Turner is the first woman affected by Harlequin Ichthyosis to give birth. Her son turns one this month!!!

The oldest person living with Harlequin Ichthyosis is 30 years old.


No comments:

Post a Comment