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My Personal Story
By: Roya, 29, Los Angeles, CA
Student, Artist, Writer
HIBM patient since 2000

I have always been interested in sciences, especially math. Since I had a passion of medicine and wanted to go to medical school, I got my diploma in laboratory sciences in Iran. Unfortunately, as a minority I was not allowed to enter medical school, so I studied at the Bahaii University. To make ends meet I worked dentist’s office while I studied painting with a private teacher. At the time I was 22 years old and three years had passed from the onset of my illness. Two years later, when the HIBM gene was discovered my family and I went to Israel. At that time, they told us that a treatment would be found in three to five years, which was true. I worked at the clinic for one more year but eventually I had to quit my job. Because there are no facilities in Iran for disabled people like me – no special buses or transportation service which made it extremely difficult for me to live a day to day life. Most streets don’t have a side walk and most buildings don’t have an elevator. People looked at me like I should not come out of my house and abandon my dreams because I was disabled. However, I didn’t feel this way. I had dreams, ambitions and passions, but how could I express this in a society that couldn’t see past my disability. I had to quit work since I starting having many falling accidents and began working with my brother in his book store.

Since, I had so much free time I started looking inward at myself and my life. I wrote poetry and short stories most of which are published. One of my stories was based on a true story. That story was revised and published four times and eventually became a novel. I worked very hard at it and it was my passion. I laughed, cried, and then I fell in love with the words that explained my life. It was the sweetest most personal experience and nothing else compared. Prior to publishing the novel though, I had to leave Iran; so I left the original novel with a publisher and thus have not seen the novel ever since. I ended up leaving in Turkey for 10 very difficult months until I finally came to the United States.

Currently, I am taking some electives. I read scientific journals and I really enjoy my math classes. But my biggest hobby is painting. Speaking a new language is not so easy for me and since I can’t express myself in words, I do that through painting. I have to paint so people can hear me.

My dream is to learn English so I can go to UCLA and study the field that I am passionate about. I want to work and have a full life. One day I hope to be able to share my paintings and my thoughts with others. Until then I continue to work hard against all odds. Every day is a new dawn. Every day, when I wake up, I tell myself I am one day closer to a treatment. I am sure that that beautiful day will arrive; as far away as it may seem. Until then, I will follow my dreams and paint my life through my poetry.