Retinitis Pigmentosa: keeping active is the key

Being active against the everyday limitations and in slowing down the disease – this has been the right way for Ines to deal with the disease since her early years.

Ines was 13 years old when she was diagnosed with retinitis pigmentosa. “At that time and until three or four years ago, I did not notice any conscious progression because the disease developed so gradually in my case. The first signs of RP appeared as failures in the visual field,” says the 27-year-old. She was studying biology at the time and was open to participating in a clinical trial of TES (transcorneal electrical stimulation with the OkuStim system) in Tübingen.
“In the study I got on very well with the application of TES and through my studies [of biology] I had quite a good insight into the background of the treatment. That’s why I really wanted to continue with it,” says Ines. She now has a bachelor’s degree in biology and is studying medicine. “There were a few longer trips, even a stay abroad in Australia once, and stressful phases during my studies when I suspended the treatment,” admits the future doctor. Apart from that, she has been using TES for about eight years. “Diving, skiing, climbing – I’m so happy that I can still do all that and I want to keep up these activities as long as possible. That is why I stay with TES,” says Ines. Once a week, she uses TES for 30 minutes. “The electrode-holders have to be well adjusted, of course, that also has to be corrected sometimes. Everything else works super-easy. When it goes through, it’s a relaxing thing. I usually lie down and do autogenic training during that time, talk on the phone via headset or listen to an audio book. It has also happened to me that I fell asleep during the stimulation and only woke up again when I heard the final beep.
Ines is always aware of her illness, but she has found a pragmatic way to deal with it: “Basically, I find it more difficult to have to stop doing something you are used to than to forego doing it to begin with. That’s why I didn’t get my driving license in the first place. I had to stop cycling six years ago, unfortunately.” However, since her family gave her a tandem, she can be on two wheels again. If one thing doesn’t work (any more), something else will work – this attitude shapes her path. Professionally, some specialisations such as surgery are closed to her, but she can imagine her professional future as a family doctor, for example in a group practice. “I am confident that this will work out, but I am also open to other things. After all, you have so many options with a medical degree.”

Ines is doing what she can to counteract the progressive blindness. And for her, this includes TES, in addition to a healthy lifestyle. “For me, the method is plausible and makes sense. And the study results so far are promising. I am not chasing a stand-still by all means, but I believe that my disease will progress more slowly with the treatment,” she is convinced. Her greatest wish: “I very much hope that I will still be able to see reasonably well when planning children and starting a family becomes concrete”.