Retinitis Pigmentosa: Fighting from experience

Caterina’s life was turned upside down by retinitis pigmentosa. Today, she deals with the disease with a lot of inner strength and will to fight and has been defying it for three years with the help of TES.

Caterina was well established with her own hairdressing salon, five employees, a partner and a six-year-old son when she noticed serious eye problems in her mid-thirties. Caterina remembers it well: “It was on a wedding night in July 1999. Actually, everyone found their way around in the dark forest, except me. So I went to the eye doctor and he immediately diagnosed me with retinitis pigmentosa. That was a huge shock at first. Initially I didn’t want to believe it either, after all, I saw every single hair.” In retrospect, however, the diagnosis explained a lot. “I’ve always been a very busy person, everything was quick-quick with me. I thought it was because of this, I often threw things down. Little did I know that my field of vision was limited.”

After diagnosis, the condition then progressed gradually, largely preserving her vision. Even today, Caterina does not need reading glasses, for example. However, her field of vision became smaller and smaller, until it was a tunnel, as she says. She had to give up her hairdressing salon in 2009, and at some point, she could no longer go rollerblading or cycling. Nevertheless, she didn’t let it get her down and fought her way to be granted a status as severely disabled. “With all the disadvantages of the illness, you also have a few advantages, but you have to fight for them,” she affirms.

This was and is also true for her on the knowledge front. Through PRO RETINA Deutschland e. V., a self-help association of people with retinal degenerations, Caterina learned about the special consultation for retinitis pigmentosa patients at the Tübingen Eye Clinic. It was here that she first heard about TES and gained hope that she might be able to stop further deterioration. Before she could start treatment, however, there were once again hurdles to overcome. Caterina did not have the financial means to pay for the device and electrodes out of her own pocket, and her health insurance company initially refused to cover the costs because TES is not (yet) part of standard care. “I finally went to court. All in all, it took another two years until the health insurance actually paid,” says Caterina.

In the meantime, she has been using TES for half an hour each week for three years. “Sunday mornings at 9 am is my time for it. In the beginning, my husband always helped me, but now I put on the device and the electrodes myself. Beforehand, I drink something and take eye drops to avoid a burning sensation. Since I’ve been doing this, I hardly notice anything,” says Caterina. After initial difficulties with individual electrodes, she now gets on well with the OkuStim system.

Caterina likes to pass on her experiences with both the disease and TES to other patients, whether at seminars or in private conversations. “I have the feeling that the disease progresses more slowly thanks to the treatment and it definitely helps mentally and morally. The check-up results also show a slowing down. So yes, I recommend it.” And Caterina has another piece of advice for other people affected: “I learned how to walk with a cane in a course and I recommend that to others, too, and preferably while they can still see reasonably well.”