“My name is Uta and I am 47 years old.
I was diagnosed with bilateral RB at the age of 18 months.
Unfortunately, the first doctor did not recognize the disease.
My parents were also sent home at the next doctor’s appointment because the eye had not dribbled.
So even after my parents’ initial suspicion, some time passed before they took me to Essen University Hospital.
The right eye had to be removed.
The left eye was irradiated.
Since then, I have had a severe visual impairment, as my visual acuity is considerably reduced and my field of vision is severely restricted.
My visual acuity is around 0.1 (10 %).
Of course, this is not good eyesight, but it is normal for me.
Although my parents always told me that I couldn’t see very well and at some point I was able to understand what the doctors had to say, I was always convinced that I could see everything.
I can’t remember anything else.
I can’t remember the treatment itself either.
I only have a few conscious memories of the check-ups.
As a child, I had many hobbies: recorder, flute, guitar, horse riding, swimming… Although better vision would certainly have been an advantage here and there, my visual impairment didn’t stop me from trying everything – mostly successfully.
In the first few years of my schooling, I attended a special school for pupils with visual impairments.
After that, I went to a general grammar school.
At that time, there was no provision for pupils with disabilities to attend mainstream schools.
Fortunately, I ended up at a school that was very open to the idea.
As I finished school with a good Abitur, the success proved everyone involved right.
I still have many friends from that time.
After leaving school, I studied special education to become a teacher and now work as a special education teacher at a special school with a focus on vision.
During my studies, I worked as an assistant teacher at an elementary school in Sweden for six months.
Looking back, I don’t have the impression that I had to give up anything because of my visual impairment.
Nevertheless, my impairment was and still is a part of me that I cannot and will not ignore.
During my studies, I took advantage of services for disabled students and got involved in political self-help.
One of the reasons I joined KAKS was because I know how helpful it can be to share ideas with others who may use different tips, tricks and strategies than the majority of people.
People who get to know me occasionally notice something about me.
This is usually squinting or the use of aids.
If someone then asks, I first explain to them what my limitations are.
If they are genuinely interested and have further questions, I then tell them about the RB, the cause of my limitations.
The surprise is usually great when I tell them about my glass eye.
Even though I occasionally assume that others will notice my glass eye, most people don’t expect to see it.
So perhaps you shouldn’t worry too much about whether the glass eye might be noticeable.
Of course, everyone can decide for themselves when and to whom they want to report an illness.
It’s a very personal thing.
To summarize, I can only say that the RB disease has of course had consequences for the rest of my life, but I personally don’t miss anything most of the time. I don’t know any different and don’t usually focus on the impairments that have arisen in my life.
When I was about 16 years old, my father once took me to a doctor who didn’t know me.
It wasn’t actually about my eyes, but the doctor asked if I had an untreated squint.
After my father had briefly explained the matter to him, the doctor said: “Oh, that must have been bad!”.
We answered almost simultaneously.
My father said “Yes!” and I said “No!”.
Now, as an adult, I can of course understand that the diagnosis of RB was a major turning point for my parents and that they found the condition itself and the treatment period stressful.
But it was all normal for me.
RB was not a big drama for me.”

Uta
Encourager