Ichthyosis Awareness Month - Kelsey's story: "I remember telling my younger sister once that I was part dinosaur."

Today Kelsey tells her story. I love the perspective and humour Lamellar Ichthyosis has given her. And similar to me, she's proved doctors wrong, showing them she can do so much more than they expected of her. 

Meet Kelsey. 

"Hi, I am Kelsey and I am fromTexas. I am a junior in college and enjoy drinking Starbucks coffee, listening to Mumford & Sons, and painting when I get the chance. I am 21 years old and have lamellar ichthyosis. In some ways I believe that having ichthyosis has been a blessing in my life. Although, living with this condition I deal with things that other people may never experience such as; 2 hour long baths or constant battles with skin infections, I believe my unique skin has made me an even stronger person today and over the years I have learned to embrace the skin I am in.

When I was young my parents were the bomb (and still are I might add). They would help me scrub my skin in the bath and would graciously endure my screaming as they helped to lotion me up afterward. The lotion is an Aquaphor with lactic acid compound, so it would often burn any spot on my skin that was raw or irritated. My parents are awesome. They never held me back from anything I wanted to do. They believed in me whole-heartedly. I was in dance, volleyball, gymnastics, Tae Kwon do, and even t-ball. There were many things I did not really understand or like to do to care for my skin when I was younger. I remember being a fairly stubborn kid and was never afraid to voice my opinion to others when it came to things I was not fond of. The memory of having to wear clothes drenched in water while playing t-ball or an umbrella hat on the playground outside are just some of the things that I remember hating having to do. At the time these things seemed like such a big deal to me, a burden when I was just trying to have fun and be a kid. I was annoyed by the extra care that I had to give to my skin that other people did not, but looking back on it these are some of the things that have made me realize how precious life is. 

I think that having ichthyosis has allowed me to look at life in a more open way. It has made me more appreciative of the little things and has taught me to be understanding of everyone and the circumstances that they come from. Even though there were things I did not enjoy having to do for my skin when I was younger I learned to have a sense of humor because of them. I remember telling my younger sister once that I was part dinosaur. After some skepticism she finally agreed with me when I showed her the thick patches of skin on my legs. I felt so accomplished and clever that I had pulled one over on her. Over the years I have learned to see my skin in a positive light and I give all my thanks to my family who has always been supportive of me.

As I have gotten older my ichthyosis has improved a lot and I am very thankful for that. I no longer look at my skin as a burden and just see it as a part of who I am. Caring for my skin has become a routine and something that I don’t think twice about. Although I still know that 100 degree weather will never be for me, I am so grateful for all the things that I can do that the doctors said I would never be able to.

Though at times I do still get a little self-conscious when my hands peel or my face is dry, my skin is something that makes me unique. I believe that in life, everyone has something they have to deal with it and that’s okay. For me it is my skin, but you never know what that thing might be for someone else. Next semester I will be going into my final year of college and I know it is going to be an exciting and scary time in my life. Even though I am not exactly sure what I want to do after I finish school I am ready to be able to feed my passion of working with children. My lamellar ichthyosis is something I believe has helped to shape me into the person I am today and I’m happy to know that I am a stronger person because of the skin I am in. "

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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