My name is Cassandra. I’m 34 and live in Monroe County, Tennessee. I have a wonderful husband and three beautiful kids. I  have Darier disease which is a rare skin disease not many people know about. I started getting it when I was 10 years old. I’m originally from Ohio but I moved to Tennessee when I was 13 and when to a dermatologist here. I had a biopsy done to confirm that I had Darier disease. 

Darier disease is a very hard skin disease (condition) to have. It’s a rash that covers your entire body. We have to watch what we eat and drink because it flares it up. Sunlight is bad for it and will cause it to spread. It blisters up and sometimes causes infections. 

I have spent several weeks in the hospital because it gets so bad. I have rheumatoid arthritis and a blood disorder called antiphospholipid syndrome. I have had several surgeries because of health issues. I had a miscarriage and had to have a complete hysterectomy. Darier disease is very painful and itches a lot. It’s hard to wear clothes sometimes, so I wear loose fitting clothes just to try to be comfortable. 

There are days where I don’t even feel like getting out of bed. It causes severe depression and anxiety and the medication we have to take causes mental health effects. It affects our nails as well. Not many people know about Darier disease and all the problems it causes, so I’m trying to spread the word and get awareness out about it hoping to maybe one day find a cure for it. People look at us like we are different but we are no different than anyone else. We are all human. This is just a little bit of my story I have a lot more to tell. 

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.