Resilient Through Experience

Caterina Carucci had to significantly change her life due to Retinitis pigmentosa. With great inner strength and fighting spirit, she now manages the disease and has been confronting it with the help of TES for three years.

Caterina Carucci was in the prime of her life, running her own hair salon with five employees, living with her partner and six-year-old son, when she noticed the first eye problems in her mid-twenties. Caterina Carucci remembers it precisely: “It was at a pre-wedding party in July 1997. Everyone else found their way in the dark forest, but I couldn’t. I then went to the ophthalmologist, who immediately diagnosed Retinitis pigmentosa. That was a huge shock at first. I didn’t want to believe it, after all, I could still see every single hair.” In retrospect, however, the diagnosis explained a lot. “I had always been a very active person; everything happened quickly for me. I thought it was because I often dropped things. I didn’t know my field of vision was restricted.”

After the diagnosis, the disease progressed gradually, though her visual acuity remained. Even today, Carucci, for example, still doesn’t need reading glasses. However, her field of vision became increasingly smaller, like a tunnel, as she describes it. She had to give up her hair salon in 1999, and inline skating and cycling eventually became impossible. Nevertheless, she did not let herself be defeated and fought for her status of incapacity for work and her severely disabled person’s pass. “Despite all the disadvantages of the disease, there are also some advantages, but you have to fight for them too,” she asserts.

PRO RETINA Deutschland e. V. remains for her the first point of reference. Through the self-help association for people with retinal degenerations, Carucci learned about the specialized consultation hour for Retinitis pigmentosa patients at the Tübingen Eye Clinic. Here, she first heard about TES and gained hope that she might be able to halt further deterioration. Before she could start the treatment, however, she once again had to overcome hurdles. Carucci did not have the financial means to pay for the device and electrodes out of pocket, and her health insurance initially refused to cover the costs, as TES is not (yet) part of standard care. “I eventually went to court. All in all, it took another two years until the health insurance actually paid,” says Carucci.

She has now been using TES weekly for half an hour for three years. “Sunday mornings at 9 AM is my time for it. Initially, my husband always helped me, but now I apply the device and electrodes myself. Beforehand, I drink something and use eye drops to avoid any burning sensation. Since I started doing this, I hardly notice anything anymore,” says Carucci. After initial difficulties with individual electrodes, she now manages well with the OkuStim® system.

Caterina Carucci is happy to share her experiences, both with the disease and with TES, with other patients, whether at seminars or in private conversations. “I feel that the disease progresses more slowly with the treatment, and it definitely helps emotionally and morally. The control examination values also show a standstill. So yes, I recommend it.” And Carucci has another piece of advice for other affected individuals: “I learned how to walk with a cane in a course and recommend it to others, preferably while they can still see reasonably well.”