National Rare Disease Day: Feb.2009

In honor of National Rare Disease Day, please take the opportunity to inform at least one friend about a rare disease that has made an impact on your life. For our family, ichthyosis is the most rare disease we have encountered. As many of you know, my little one has lamellar ichthyosis.

I just searched the web for photos to post of various cases of ichthyosis. I started tearing up while looking tons little ones entry into this world. It was so much more difficult than most could image. Please brace yourself before looking at the photos... some will pull on your heart strings.

The following photos show a variety of types of ichthyosis and were copied from flicker.

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Please check out the our family scrapbook to see photos of little J. His ichthyosis does not seem as severe to me as the above photos.

The following has been copied from a previous post:

The day he was born we made history at the local hospital. From the moment he arrived, he kept the nurses and doctors on their toes. The hospital had definitely never seen such a special little guy before. J was born with a rare skin disorder know as lamellar ichthyosis.

Basically what it amounts to is that his dead skin does not slough naturally and has to be physically removed from his body. Of course, this isn't nearly as fun as it sounds. There is much more to having ichthyosis than the physical aspect of it and I am sure you will learn alot from reading about our small moments.

Ichthyosis is a big part of J's life but definitely not everything. This little guy is full of life and love. He knows what he wants and does whatever it takes to get it. He might love you all over (kiss each and every body part from your neck to the tip of your head) or turn around and wallop a big punch. Right now, he loves to play outside, listen to music and dance.