Retinitis pigmentosa: Maintaining quality of life is the guiding principle

Staying active despite everyday limitations and slowing the progression of the disease – for Ines Wolf, this has been the right way to cope with the condition since she was young.

Ines Wolf was 13 years old when she was diagnosed with retinitis pigmentosa. “Back then, and up until three or four years ago, I did not notice any obvious changes—perhaps also because the disease developed so gradually for me. The first limitations then appeared in the classic way: I could see worse and worse in the dark. Then I also experienced increasingly larger losses in my visual field,” says the now 27-year-old. She was in the middle of studying biology and had already taken part in a clinical TES study in Tübingen when she faced the question of what to do next.

“In the study, I coped very well with using TES, and thanks to my studies I had a fairly good insight into the background of the treatment. That is why I definitely wanted to continue it,” says Ines Wolf. She has since earned a bachelor’s degree in biology and is studying medicine. “There were a few longer trips, including a stay abroad in Australia, and stressful phases during my studies when I paused the treatment,” the prospective doctor admits. Apart from that, she has been using TES for seven years.

Once a week, she uses TES for 30 minutes. “The glasses of course have to be properly adjusted, and that sometimes needs to be corrected. Everything else is super easy. When it is running, it is a relaxing thing. I usually lie down and do autogenic training during that time, talk on the phone via headset, or listen to an audiobook. It has even happened that I fell asleep during the stimulation and only woke up again when the final beep sounded.”

Ines Wolf is always aware of her condition, but she has found a pragmatic way to deal with it: “Basically, I find it harder to have to stop doing something you are used to than not to do it in the first place. That is why I never got a driving licence. Unfortunately, I had to stop cycling six years ago.” However, since her boyfriend gave her a tandem, she can get around on two wheels again. If one thing does not (or no longer) work, perhaps something else will—this attitude shapes Ines Wolf’s path. Professionally, some specialties such as surgery are closed to her, but she can imagine her professional future as a general practitioner, for example in a group practice. “I am confident that it will work out, but I am also open to other options. After all, there are so many possibilities with a medical degree.”

Ines Wolf is doing what she can to counter progressive blindness. And for her, that includes TES. “To me, the method is plausible and makes sense. And the study results to date are promising. I am not fixated on things staying the same, but I do believe that my condition is progressing significantly more slowly thanks to the treatment,” she is convinced. Her greatest wish: “I very much hope that I will still be able to see reasonably well when the topic of family and children becomes urgent.”