Seizing Opportunities – Even After Decades with Retinitis Pigmentosa

Mr. Haap has been living with a diagnosis of Retinitis Pigmentosa for 40 years and makes the best of it. For the open-minded 80-year-old, this includes new treatment methods like TES. Initial effects are already becoming apparent.

“You get used to the limitations, and I’m still doing well when I think of the many people with truly severe illnesses,” says the 80-year-old.

Over the decades, he has also learned to use his other senses even more. Railings are felt, stairs are counted, and Haap has intensely memorized everything in his surroundings. “Knowledge of the conditions and spatial arrangements is, of course, a prerequisite. Order is very important so that I know where things are. Then I manage quite well and can, for example, still work in the garden.” And this, even though Haap is now almost completely blind. “Color vision has not been possible for a long time. But in one eye, I still see a small island in the upper half where I can distinguish between light and dark and thus recognize outlines,” Haap explains.

The trained banker and later programmer was able to pursue his profession at the Sparkasse’s main data center until 1998. “Around 35, I first noticed that my vision was deteriorating, especially at night, in fog, and in the rain,” Haap recalls. Over the decades, a fairly typical progression followed: Haap’s field of vision narrowed further and further. “At that time, one could only observe it, but do nothing about it. Nevertheless, between 2001 and 2009, I could still walk familiar paths alone,” says Haap.

Through a chance encounter in his private life, he learned about retina implants and transcorneal electrical stimulation in early 2017. At an information event organized by the Eye Clinic in Tübingen, Haap was able to deepen his knowledge and immediately contacted the speakers. “I would certainly have been a suitable candidate for a retina implant. However, after extensive discussions at the eye clinic, I decided on TES – also because both eyes could then be treated equally.”

Since April 2019, Haap has been using the OkuStim® system, with his son assisting him in handling the glasses and electrodes. “Of course, my son can’t always be there, but then, and also as a ‘holiday substitute,’ my other son helps me,” Haap explains. For a smooth process, it is very important for him to sit quietly with his eyes closed during the application and not to talk. He gladly passes on this recommendation as a message to other users.

Regarding success, he is confident due to his outlook on life: “I am always open-minded and an optimist. As long as there can be a small success, I believe one should try.” Haap has indeed noticed a change after these approximately one and a half years of treatment: “I have the feeling that everything is much brighter since I started stimulating. And close to my eye, I perceive more than before. For example, I can increasingly recognize hand movements.”

Haap would like to exchange experiences with other users and would be pleased if anyone is interested. Okuvision is happy to arrange contact.

Mr. Haap, RP-Patient