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Lilia R.

When I was about 4 months old (in February 2003), my parents noticed a squint in my right eye and took me to various ophthalmologists, but they said that my parents should see me again when I was 2 years old, as the squint could not be treated at such a young age. When my parents discovered a white pupil on flash photos of me at the end of 2003, they urged my ophthalmologist to refer me to a university clinic. Fortunately, everything went relatively quickly after that: after an appointment at the University Hospital in Giessen in mid-January, we were referred to the University Hospital in Essen with a suspected diagnosis of retinoblastoma, where we were given an appointment for an examination just two days later, which confirmed the diagnosis. Three days later, on January 29, 2004, the enucleation was performed, which fortunately went without complications. The DNA results at the time showed a non-hereditary unilateral retinoblastoma, which made my parents breathe a sigh of relief, as did the fact that my twin brother Luke did not carry the degenerated gene and would therefore remain “unharmed”. From then on, I learned to live with one eye, ball games are still a bit difficult at times, but I’m getting better at table tennis 😉 I always found the visits to my ocularist at the Müller & Söhne Institute in Wiesbaden, initially every three months and then every six months, to be really great, because I could go on an outing with my mom or dad all by myself, sometimes without my twin brother.

I was very lucky with my understanding and supportive environment, but every now and then there were also unpleasant situations such as children who teased me about my eye at the vacation camp or my PE teacher in year 8 who gave me an F in badminton despite knowing about the limitations of my eye. Although I actually like to talk openly about my prosthesis and my history, there are paradoxically still situations that make me feel ashamed. For example, when I spend the night with friends I haven’t known for very long, I wear my eye when I sleep.

But let’s continue with the timeline: in mid-2016, I received a letter from the human genetics department at Essen University Hospital asking me to send in a new pap smear. No sooner said than done. A few weeks later, another letter arrived from the human genetics department with the result that my retinoblastoma was hereditary after all. I only realized exactly what this meant for me and, above all, any offspring, about 3 years ago when I had a consultation with Prof. Dr. Lohmann, the human geneticist who had already treated my case in 2004.

In all the 20 years I’ve been living with just one eye, I’ve actually never met another retinoblastoma survivor and I’m really looking forward to that changing now. Because although I think my life has gone well so far despite all the adversities, there have been times when I have felt different and misunderstood and wished I had someone who had been through something similar to talk to. I would love to get involved so that other sufferers and relatives don’t have to feel the same way.

I now live in Cologne, am a registered nurse and study medicine at the University of Cologne. I cheerlead, love to dance and am always happy to meet new people.

The book “Elis, Elba und Elli” (a really great idea and design, by the way) was on display in my ocularist’s waiting room, which drew my attention to the KAKS. I also told my parents about KAKS and the Zoom regulars’ table and they would like to take part 🙂

Lilia R.
Encourager