24 May 2013

Ichthyosis Awareness Month: Jeremy's story ~ "I took some joy in the awkwardness the other person felt for asking me about my skin."

Jeremy was the first person to see the Ichthyosis Awareness Month blog project and request to be involved! I was so happy when this happened - I love how one person sharing their story encourages others to do so too. He is 34, lives in New Jersey, USA, and has Netherton's Syndrome.

"When I was born until about 2 months old, the doctors told my mom not to get attached to me because I was labeled as "Failure to thrive". I remember stories my dad told me of waking up and lifting my head off the pillow and the whole side of my face still being on the pillow. I used to receive blood plasma transfusions when I was little to help me. As I got older, my skin became less severe but still fragile at times. I started playing ice hockey at age 13 and fell in love with it. I have been lucky that no one in school ever picked on me. The worst people to deal with were strangers because they were rude when trying to ask "what is wrong with your skin?"

I finally started telling people I had a rare skin condition and took some joy in the awkwardness the other person felt for asking me to begin with. I went through college and graduate school and I am now a licensed social worker.

The people I work with usually are fine with my skin and don't ask. Of course I still get the occasional sunburn comment but nothing too crazy. I want to continue helping people and would like to work with veterans in the future.

I still play hockey when I can and love playing guitar. I have been around the world and have had amazing experiences and do not let my skin hold me back from doing the things I want and love. I have a girlfriend now and she is wonderful and understanding of my skin condition and respects me for who I am and what I have to manage. I shave my head due to the bamboo hair but it seems to work so I keep doing it."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.



  1. I love reading this. Without going into a long, drawn-out tale, I met Jeremy through the mutual love of Dave Matthews Band. The first time I met him in person was in Wisconsin, at Alpine Valley. I was with other friends and I don't know of anyone who saw anything in him except that he was from NJ and we thought it was great to meet him.
    Jeremy and I have not seen each other for awhile, but have talked online, sometimes for hours. I was lucky to share a wonderful concert with him at Radio City during a very fragile time in my life, thanks to him and other very special friends.
    I love seeing him happy and having someone to share his life with. I don't get to talk with him as often now, but I see that as a good thing! He is busy and has his pretty lady to occupy his time, so when I occasionally catch him online we say,"hello" and quickly catch up a bit.
    It is and has always been my hope that people would learn to see each other from the inside and not by what might be on the outside. Life is such that we are all different. After all, what is perfect, really?
    I happen to have a genetic mutation which caused me to be at high risk for certain cancers and nobody would know that, because my affliction is inside. I only found this out a few years ago, when I was diagnosed with a cancer that didn't fit my physical profile and then my sister had the same thing just a couple of years later, causing the doctors to suspect our condition was not just coincidence. That does not change who I am. How would anyone know I have had surgeries and treatments to make my risk next to 0 now? There is no reason for them to, but occasionally I do have to explain why I have to be mindful of where public restrooms are, thanks to having no colon. Nobody cares if I have no colon, because they cannot see this. Nobody should ever care if a person has a skin condition or any other outward, physical issue either.
    I never saw Jeremy in any way except as my dear friend, who made me smile, shared some interests with me and as a fellow human being I enjoyed talking with. Had we lived nearer to each other I expect we would have been even better friends, even though I am several years older than him. That's only in years! :)
    Continued wonderful wishes for him and my best to anyone else who finds themselves here.
    jackie from indiana

  2. Hi Jeremy, really enjoyed reading your life story, and so pleased that you have someone special to share your life with. I am curious about something! What are you holding in the top photo? It looks like a Pelican skull to me!! Can you enlighten me please? LOL. I knew another girl with Ich in USA who played Hockey also.

    Take care


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