Age at Diagnosis
- 8 / -8
Nothing. Doctors don't know what to expect. They always ask me how I feel. They can't help me.
Impact On Your Life
They took my driving license ,so I'm not mobile. I can't even see those biggest letters on eye-specialist board. And I'm only 2 meters away from them. It is difficult for me, for example, in grocery shops, on streets, on computer, when I watch television...etc. I must sit 1,5 meter far away from television to see "normally". When I'm using computer (that like; each day!), when I'm reading newspaper or books and things like that, I must be very near them. People who don't know that I have the disease are always telling me, "It would be helpful for you to wear glasses." Then I look at them and say, "Actually, I am wearing lens, but I have an incurable eye disease." But, even then, people don't understand.
Actually, I have 2 jobs! My husband's family and I have a construction company, and I am in charge of Human Resource, Marketing Finance and all other expectations of the job. Most of my work time I spent in front of computer.
My other job: I am Belly Dancer! Actually, I am an instructor, choreographer and belly dance event organizer!
More About Me
I am 26 years old. I have an MBA diploma. My husband and I finished Kelley School of Business of Indiana University, here in Croatia. There is collaboration with Kelley and our economy faculty here in Croatia. But we have visited Bloomington in Indiana!!! Actually, we are applying now to finish MS in Strategic Management. It was hard for me to finish my schooling, because I can hardly see the blackboard. But I always had my husband near me and other students. All professors always had understanding. :-)
For 5 years now, I have been a Belly Dancer, and I am so proud of that. I really love music and dance! I never dreamed of become a dance teacher, but here I am! I have 60 beautiful students and my own Belly Dance Group. I am teaching dancing 10-15 hours weekly. You can visit my web site at www.trbusniples.net.
Stargardt also gives me problems with dancing. For example: I must standing about 1,5 meter away from glass. In other way...I don't see clearly my body and eyes and see at all. So...I hardly see my students in the mirror, but I manage somehow! They have understanding!
Except dance, my husband and I are also very active in playing golf, skiing, yachting, etc. Nobody understands how I can play golf, but I can!
We live in the capital city of Croatia, Zagreb. I don't know anybody with this disease. I am with the best eye doctors in Croatia, but they can't help! I have been in Ljubljana (capital city of Slovenia) on other researches, but they also can't help.
At the end: I believe that anything is possible if you really want it!!! I believe in myself! I m not letting this disease bother me in achieving my goals! :-)