30 May 2015

Ichthyosis Awareness Month - Robin's story: "If you look around you can meet wonderful people."

Tonight is Robin's story - the last for Ichthyosis Awareness Month. Robin writes of life with Lamellar Ichthyosis. She has three children who are fiercely defensive of her, which makes her so proud. She also mentions the severity of Ichthyosis - last year she had an infection so severe she almost died. 

Meet Robin.

"I am forty years old, one of three daughters and the only one with lamellar Icthyosis. I have been married for 16 years now, with three children of my own, none of them have Icthyosis. I also have one grandchild who does not have it either.

I was born with lamellar Icthyosis, and until I became an adult I didn't realize how lucky I was to have wonderful insurance and health care. I had a skin graft on my eye when I was 15 that made me being different a lot worse. The graft looked great, and has lasted for 25 years. 

I have had a lot of self esteem issues, but as I grew up I found that if you look around you can meet wonderful people. 

I have lived in Iowa most of my life. I do not tolerate the heat so I spent most of summer inside. My childhood was rough, kids are very mean calling me names like dragon and snake girl.
People would ask if I was in a fire. I remember once a lady asking me when I was about 10, checking out at the store, if I had been in a fire, and I looked at my dad behind me and said yes, and that the rest of my family died. I really do not understand why people feel they have the right to ask such questions to people, especially to a child. 

My sisters were wonderful to me, for my whole life. I am so lucky to have them and their love. As I grew, my skin got better and people said they didn't really notice it, but I am not sure if that is true. The words that were said to me as a child changed me and left its mark on me forever.
I raised my children to never look down on people that are different, and they are amazing. I remember when they were like 5, 8 and 11 and someone said to them "what is wrong with your mom's skin?" and all three of them yelled and said "don't you ever talk about my mom skin! She is beautiful!" I have never been so proud of them. 

So I have used several oral medications, lotions, ointments sun therapy and injections. In my thirties my skin changed like never before and I found out I had Psoriasis. My dermatologist said that is just cruel to have to these skin conditions together. So it has been difficult treating both skin condition. Last year I got a bad infection, but didn't have insurance and waited too long, and ended up in the hospital and was told I almost died. 

With my skin, infection can get in the body easily, so after a week in the hospital I was told I will not work again, and to apply for disability. So I did, and of course was approved, and then several months later I found out that I had Socratic arthritic, so my treatment is ever changing but after joining the FIRST page I realized how lucky I am compared to others."

This post was edited by Tash. Follow her on Facebook and Twitter.

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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