The story of Renee
My son was born with erythrokeratodermia variabilis, or EKV for short, in the Ichthyosis group of skin disorders. It presents at first with large areas of angry red looking skin. In time spots will thicken to be scaly patches. It is a genetic disorder passed on through the male gene. His father was the first case in his family.
As he was growing up the need to constantly educate others was always present. When he was a year old a random stranger came up to me and demanded to know “what did you do burn that poor baby?” The large bright red patches all over his skin looked terrible to them. I replied back calmly that no, it was a genetic skin disorder. This still stays with me even though he is 19 now.
I’ve had CPS called on me for people not thinking I was caring for him properly. I broke down in tears that day. Luckily, we have good doctors and precipitated in a studay at NIH so I had tons of documetation for them.
The end of Elementary school and middle school were very rough. Even with all the creams and baths his skin still smelled. It was very hard to keep explaining but we did our best.
Now that he’s older we’ve been having some luck with super low doses of accutane helping to keep his scaly areas down. He’s helped wih Grand rounds at USF and offered to answer questions at several doctor’s offices. He understands how important it is to keep educating people. I’m very proud of him although it’s been a challenging journey.