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Bratislava, Slovak Republic

Stargardt disease

Eyes Affected

Eye Color

Age at Diagnosis

20/300 0D, 20/200 OS

None at the moment. I took different vitamins and tablets. In 1995 experimental vitrectomy with membrane stripping (right eye) in Slovakia.

Prognosis or Current State of Vision
Officially blind as in Slovakia and in US.

Family History
No one remembers anyone with this diagnosis. I am the first one.

Impact on My Life
It changed everything. I had to leave some of my dreams and create new ones.

Positive Effects
I started to be more interested in people, from other countries too. I travelled to Nelson Clinic in Virginia in the USA for consultation. I learned to not stand back, but go out with all my needs and ask friendly for the help I need. I can see that it changes them and makes them think more deeply about life.

I use hand magnifiers, TV magnifier, magnifying programs in Windows and Linux, and telescope.

I was a teacher in the kindergarden in spite of my bad vision. Now I am mom at home with 3-year old daughter and 9-month old son. I teach English.

More About Me
I am so happy to find THE STARGARDT'S TEAM!!!! My american friends helped me to find it. I do not know anyone with this disease in Slovakia and I feel so lonely in this problem. Doctors are not interested in me because they can not help me. I go there just when I need some recomendation for low vision equipment.

But....Despite all of this, I am quite positive person. I would like to encourage everyone with Stargardt's not to give up! I am absolutely independent and I live normal life. I live in the capital of Slovakia, and we have very good public transport, so I do not have any problems with travel. My 3 year old daughter already helps me a lot. She starts to recognize the numbers. She knows that mummy does not see well, and she warns me when we can not continue our way because of any obstacles in near distance. My husband is very helpful, too.

It was hard at the beginning, as I grew up in a disharmonic family. My father died in car acident when I was 3, and my mother became an alcoholic. I was keen on reading books. I sometimes read 20 in one month when I was a child. I had always the best marks at school. You can imagine how it hurt me when my sight went away within a year! I was just 16 and I DID NOT HAVE ANY FAMILY SUPPORT AND EVEN SUPPORT FROM MY OWN EYE DOCTOR! But I had always good friends. My faith in God helped me to cope with everything. I finished Secondary pedagogical school without any magnifying help, becouse I was not told from anyone, and I found out about low vision equipment just when I was 24! I used bigger size copies and my good memory. I finished my school with the best marks.

And now??? I love children very much - their sincerity, happiness and simply life. I have wonderful daughter and son, and I love them very much. I have many friends who comes to me for advice or support. I try help other as much I can. I participate in organizing free time activities for the smallest children 0-4 years old in one mothers club. Many people who I meet do not know about my disease, and when they know me more closely they are shocked. They do not understand how I can live such a normal life, but I CAN! SO NEVER GIVE UP!

I love traveling, hiking, swimming and meeting people. I can speak Slovak, English, Hungarian and I have just started to learn Spanish.

I would love to find out as soon as possible if my two beloved children have SD, too. I am looking for available gene testing near our country.

I have a dream to meet someone with Stargardt's as I have. It would be wonderful to organize the meeting in Europe and deal with our problems and make some activities together. I thank Dan for doing these pages for Stargardt's. His dealing with his life helped me very much!

Now I know why I was so keen on learning English. Lots of people told me to pray for a miracle for me. But I never felt like doing it. But I know now that I will pray for the group of researchers to find a suitable treatment! It would help everyone with SD, not just me!

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