(Reutlingen/Tübingen) – The first retinitis pigmentosa patient day at the ophthalmology department of the University Eye Hospital in Tübingen was a great success. Last Saturday, under the banner “Meet the Experts”, world-renowned specialists offered blind and visually impaired people and their families an overview of the latest research. Patients being treated using transcorneal electrical stimulation or who have received an electronic retinal implant gave first-hand accounts of their experiences.

“Tomorrow sees the start of the “Week of Sight”,” said Prof. Eberhart Zrenner, welcoming visitors to the first retinitis pigmentosa patient day in Tübingen last Saturday. This exceptional event, hosted by the Centre for Rare Diseases (ZSE) at the University Eye Hospital’s ophthalmology department, fitted perfectly into the Germany-wide campaign that brings together activities under the key theme of “Understanding and preventing blindness” from 8 to 15 October 2017. Over 500 participants, visually impaired people and their families came along to Tübingen. Due to the high level of interest, the proceedings had to be moved to a much larger auditorium near the new University Eye Hospital in Tübingen before the event got under way.

The slogan of the patient day – “Meet the Experts” – more than lived up to its name. Prof. Zrenner, Dr. Katarina Stingl, Prof. Karl Ulrich Bartz-Schmidt, Dr. Andreas Schatz and Prof. Dominik Fischer – internationally renowned specialists from medicine and research at the University Hospital of Tübingen – came together to answer participants’ questions in person.

Dr. Stingl, who is responsible for surgery for congenital retinal diseases at the University Eye Hospital in Tübingen as Prof. Zrenner’s successor, won the 2017 Retinitis Pigmentosa Research Prize from the PRO RETINA Deutschland patient association just a few days prior to the event. Among other things, she spoke about the latest studies on retinal implants. Retinal implants can help some blind patients regain part of their sight. Prof. Fischer informed visitors about the possibilities offered by gene therapy, although these are still in the study phase. Prof. Bartz-Schmidt, the Medical Director of the University Eye Hospital in Tübingen and one of the world’s few specialists who can perform this operation, then explained how a subretinal optic chip is implanted. He also presented other visual protheses that have been implanted in Cologne. The audience listened attentively to the remarks by Prof. Zrenner, too. He described the state of research relating to treatment options for RP. He explained that, depending on the patient and the progression of the disease, a decision has to be made on whether prevention, retention or restoration is appropriate. Medication-based treatment, gene therapy, electrical stimulation or electronic implants could thus be possible. Dr. Schatz, whose roles include that of study manager in the Experimental Electrophysiology department at the eye hospital, used his presentation “Transcorneal electrical stimulation (TES) – an initial treatment option for RP” to explain what conditions need to be met to decelerate the progression of retinitis pigmentosa in patients with sufficient residual vision using electrical simulation.

Alongside the presentations by the experts, what made the patient day so extraordinary for patients were the reports by other affected people such as Verena Heier. The 26-year-old RP patient travelled from Cologne to talk about her personal experiences with electrical stimulation: “TES treatment gives me the reassurance of doing something to combat the progression of the disease.” Having the feeling of being able to do something to fight the disease was also important to Peter Böhm when he had the implant inserted at the age of 47. Böhm, an IT consultant, outlined his experiences with the chip: “The chip helped me to better find my way around in the dark, especially with strong light sources and contrasts. However, this isn’t possible without training.” Miikka Terho from Finland was introduced by Prof. Zrenner as a true pioneer, because in 2008 he was one of the first patients in the world to be implanted with the chip from Retina Implant. Terho was not only able to read his name, which was laid-out in front of him in 8 cm white letters on a black background, but was even able to correct it: “A man who had until now been blind points out a spelling mistake in his name,” said Prof. Zrenner, describing the research success, which caused quite a stir at the time. Following successful reimplantation, the completely blind RP patient now wears the enhanced version of the chip – the RETINA IMPLANT Alpha AMS (https://www.retina-implant.de/en/), which has CE certification.

Karin Papp, a representative of self-help organisation PRO RETINA Deutschland e.V., gave a very moving description of how, despite all the advances in medicine, a retinitis pigmentosa diagnosis is still initially a shock. She herself suffers from the condition and described how it feels when a doctor explains to a patient that he or she is suffering from an incurable disease that will lead to destruction of the retina and usually total blindness in the final stage. An unwillingness to accept the apparently inevitable progression of this hereditary degenerative retinal condition certainly acted as an impetus for many of the assembled participants. And even though the experts could not – and would not – promise them any miracles, they were nevertheless able to convey a powerful message that there has never been so much promising research into understanding and preventing blindness.