Wednesday, May 22, 2013

IAM: Learning by Sharing

I talk about the FIRST Foundation a lot. I am a huge advocate for this foundation and want everyone to know about it so we can help raise awareness to ensure the future of those affected, will improve. Improve with treatments, finding cures, educating others including doctors, connecting families affected and shining a positive light on those affected so their interactions with society are comfortable and accepting.

Educating others about Ichthyosis is important for many reasons. It gives a better understanding of what those affected go through on a day to day basis and how it feels to deal with different social situations. And by educating not only the average reader but medical professionals and doctors, who are unfamiliar with Ichthyosis and its treatments, will do nothing but improve the lives of those affected.

This post is about sharing. Sharing sites, blogs and personal stories to help with the education of Ichthyosis. Please take some time to learn more about FIRST, the genetics, research being conducted and personal stories. Please consider sharing this post inoder to help raise awareness by educating others.

As I am editing this post, I have to add Hunter's story which was featured on Inside Edition. Hunter is 19 and is affected with Harlequin Ichthyosis like Evan. She is an inspriation and has wonderful outlook on life. In her words exactly, "It's OK to be different; It's a part of life."Click here to see the VIDEO

Educational Sites/Blogs/Support:

Be sure to look through their site to learn more about Ichthyosis and their mission. Here are quick links for your convenience!!

This blog is absolutely wonderful. It is very educational in so many ways. From sharing personal experiences with Ichthyosis to detailing the genetics of Ichthyosis (for someone like me to understand it), to the history of Ichthyosis; this blog is full of information. Parents of affected children, one parent being affected herself, they have been huge supporters of the FIRST Foundation as well giving support to others with Ichthyosis.

This is a community of those affected by or caring for someone with Ichthyosis: to share, connect and support each other through the internet. Created by Melanie, this site has been helpful connecting others affected, as well as "trouble shooting" with ideas, opinions, or preferences of treatments, skin care regimens and dealing with society. 

Personal Blogs:

Carly is a magnificent individual. She is a blogger, writer, TV presenter and huge appearance advocate.  Her blog chronicles her journey in life while living with Icthyosis, Netherton Symdrome. For Ichthyosis Awareness Month Carly has been hosting guest posts of those affcted by or caring for someone with Ichthyosis. A MUST READ!
(photo courtesy of Carly)

Blessed by Brenna
Brenna is 16 months old and is also affected by Harlequin Ichthyosis, like Evan. We had the honor of meeting Brenna and her family when we took a trip out to Illoinos to their home. It was a delightful weekend and Evan and Brenna were super cute together. This blog is written by Courtney, Brenna's mom, and she does an great job of sharing her story while raising awareness for Ichthyosis.

LifeasUSdotcome: With faith that will move anything
Stephanie is a gorgeous Mommy-to-be and is the first woman, with Harlequin Ichthyosis, to ever be pregnant. Due any day now, Stephanie shares her story about her life living with a life threatening disorder, with a baby on the way, a loving husband and two happy dogs.

The Blarney's
Jessica is a wonderful Mommy to a precious little boy named Wyatt. Wyatt was a micro-preemie who is affected with the EHK form of Ichthyosis. Wyatt had a twin named Michael who was sent to heaven too early but I'm sure has been an angel watching over his brother. Wyatt is absolutely adorable and Jessica shares their story through this blog.


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