Monday, May 14, 2012

Ichthyosis Awareness Month- Week Three: Ichthyosis Education

Evan was born into a situation which could be thought of as an 'ideal' situation for the birth of an HI baby. Granted his premature birth was not ideal, the amount of educated doctors and nurses who had experience with Ichthyosis and were aware of his diagnosis before he was born, seems 'ideal'. We were very fortunate for the amount of education about Harlequin Ichthyosis that surrounded us at the time of his birth and neonatal stages.

Looking and thinking back to the time of Evan's birth, I can still remember how confused and unclear Ichthyosis was to me. The thought of Evan possibly not surviving an infection didn't make sense in my mind. After consulting with Evan's dermatologists daily I started to have a better understanding about his infection risk but still had so many questions and uncertainties about Harlequin Ichthyosis. A week after Evan was born, National Geographic aired the episode Extraordinary Humans: 'Skin' which examined two different skin disorders, one being a girl with Harlequin Ichthyosis. My husband and I downloaded it, since we missed the original air date. We were amazed with the amount of information we learned from it. It gave us an optimistic outlook for Evan's future. If you have not seen this video before, I recommend you educate yourself and watch it by clicking here. I could not tell you how many times we watched that video. Not only did it educate us about the details of Harlequin Ichthyosis (HI), but it prepared us for events that we could face (i.e. g-tube, skin care, eye care, hair growth, social situations etc). Seeing Hunter's optimistic view on life and mission to educate others is inspiring. I have not met Hunter in person but look forward to meeting her and introducing Evan to her in the future.

Ichthyosis Awareness Month is about raising awareness for this life long disorder. Unfortunately last year, I did not eagerly promote Ichthyosis Awareness Month. A year ago, Ichthyosis still was very new to me and I was still so overwhelmed with it. I considered participating in FIRST's 'It Makes Cents to Help FIRST' coin collection last year but as I said, I was still so overwhelmed with Evan care (but very excited I carried on the idea this year). After Evan's 1st birthday and first summer I had become more comfortable with his care and how to deal with the challenges associated with it. Evan's second Christmas seemed more like it was his first. Especially since he is developmentally behind and was acting more like an infant this time around. After Christmas had past, I stumbled upon a blog about a baby that had recently been born with Harlequin Ichthyosis. I instantly felt connected to this family and was eager to help in anyway I could, having just gone through an HI birth 18 months prior.

I stumbled upon this blog Blessed by Brenna which I had found through the FIRST Foundation facebook page. My family connected with the FIRST Foundation when Evan was born but we did not reach out to anyone who was affected by Ichthyosis until I read Courtney's blog. It was the moment when I knew I was ready to reach out to another family. I wanted to help answer any questions or give them any tips about caring for a Harlequin baby. Her entries inspire me and I admire her strength and willingness to share Brenna's story to help raise awareness for this condition. My initial plan from the get-go was to send her family a care package of skin, nail, and ear care items that could be beneficial for her little girl when she came home. Coincidentally enough Brenna's care package arrived the day before her discharge. It was so exciting and relieving to read about Brenna's discharge which stirred up emotions of my not so distant memories.

Another reason why I felt so connected to this family is because Brenna's daddy's name is Evan. I literally almost fell off my chair when I first read it. I am so glad I reached out to this family. I have enjoyed connecting with Courtney and I am looking foward for the day when we get to meet her and her beautiful family. After I reached out to Courtney's family, I was interested in connecting with other families who were affected by Ichthyosis. I have been fortunate enough to have met two different families and their affected child and know will be friends for life.  :-)

Each year, Rare Disease Day is celebrated the last day of February. As I researched into Rare Disease Day on it's official site, it listed a few ideas on how to raise awareness. One idea was to start a blog. I had never read, followed or even thought of creating a blog before I found Courtney's. She inspried me in many ways to create a blog to raise awareness and to finally reach out to the Ichthyosis community. I set up this blog with intentions to educate others about this life long disorder as well as supporting the FIRST Foundation by raising donations to help fund research to find a cure.

Since Ichthyosis Awareness Month it is about raising awarness and educating others. Here are a few links of informative sites and blogs of others caring for or living with Ichthyosis.


Video- National Geographic documentary about Harlequin Ichthyosis

Video- The FIRST Foundation Story

The Foundation for Ichthyosis and Related Skin Types (FIRST)

Blogs, personal experiences and support:

Blessed by Brenna

Tune into Radio Carly


Friends of Ichthyosis

Confetti Skin, Beauty Within

Kisses for Evan at 23 Months


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