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.”
For Ichthyosis and appearance diversity resources, click here.