“I live in hope of a cure”

Hanna Renner smiles as we arrive in the German town of Enkenbach after a journey of some three hours. Her family home, a new build painted in white, is easy to find among its neighboring buildings in this small suburb of Kaiserslautern, occupying a prominent spot next to a striking village church made of characteristic Palatinate red sandstone. “Come in,” she says, arms wide open. At first I am a little confused. We have only been in contact by phone and via WhatsApp, and I have been unable to get a proper idea of what she is like until now. The videos she sent me from her time as a dancer and fitness trainer in Hamburg reveal little or nothing about her current state. Is she blind or not?

Hanna Renner is waiting for a treatment. In the meantime, she is doing everything to live a fulfilled life.

I must have unconsciously assumed that she relies on a mobility cane and sense of hearing to find her way around. But Hanna is different. She looks into our faces, shakes our hands, and moves naturally as she leads us around the house before we sit in the garden to interview her. Only later does she tell me that she hasn’t learned to walk with a cane yet, and that she can use the little sight she still has to get around the house. Hanna’s home is conspicuous for its bare walls and almost clinical tidiness – I assume because she and her family have only recently moved to Enkenbach. Her spacious garden, which we can see from the living room, contains the remnants of the walls of a demolished house. Next to the freshly laid lawn is a fallow, weed-ridden spot with stones and slabs piled up here and there. It looks like there is still work to be done on the property, both inside and out. As we go upstairs, Hanna explains to us that the walls have been intentionally left bare. “I used to like having decoration everywhere, but now I want the house like this.” In addition to the bedroom, which consists of only one bed, there is also a closet room, which can be accessed from two sides. The house has a large bathroom that is just as uncluttered and hotel-like as the other rooms.

For Hanna Renner the empty space is life-saving.

But her daughter’s room is out of bounds. “She’s 17 – a proper teenager and a bit shy too,” says Hanna. “Her room is the total opposite of the rest of the house. In fact, it would be dangerous for me to enter.” She explains that there could be something on the floor, and that she could slip and injure herself. This is the very reason why the whole house looks so plain and unadorned. Nothing blocks the way, and all the things that tend to be left lying around in other homes are neatly stowed. “I need order in my life. It keeps me safe.” Hanna later points to a small scar on her forehead. She says she was fumbling around her shoe cabinet and had not realized that one of the doors had been left open. On another occasion, she reached into the sink and almost cut her finger open on a knife that is normally kept in one of the drawers.

Life came to a standstill As we sit down in the garden, Hanna tells us how her eyesight deteriorated dramatically over four years ago. Back then, shortly before the COVID pandemic, she was still living with her family in Hamburg, had two jobs and led a fulfilling life. She already knew she had retinitis pigmentosa (RP), a hereditary disease in which parts of the light-sensitive retina slowly die off, possibly leading to complete blindness. While learning to drive at the age of 18, she had noticed a dark line in her field of vision when checking her rear-view mirror, whereupon she went to a hospital that diagnosed the 
condition. “It was nowhere near as bad as it is now,” says Hanna. “I could still do everything on my own – drive a car, ride a bike, go to work, write letters. There was just a tiny, wafer-thin black line. Otherwise, I could see clearly. It took years for the black line to start getting thicker. Things only came to a head three or four years ago. Then I thought: OK, you are going blind.”

Hanna’s world came crashing down during the pandemic. Not only did she lose her job at the employment office in Hamburg, but she was also barely able to give dance and fitness lessons. With her eyesight getting rapidly worse, her life came to a virtual standstill overnight. The family subsequently decided to move to Enkenbach, where Hanna’s husband already owned a piece of land. The intention was to build a house and settle in Germany’s Palatinate region. Hanna’s husband found work at the nearby Philippsburg nuclear power plant, and her daughter also got set for the move. But relocating was not easy. Even today, Hanna still struggles to hold back the tears when recounting her story. “And now I am almost at the end of my tether already,” says the 43-year-old. “I smile, but I am falling apart inside.” Although she would never dream of committing suicide, she keeps questioning the point of life. But then she gives us her own quick-fire riposte: “I live in hope of a cure. I know there definitely is one. I know that someone somewhere has the answer, and I am waiting for it. And I always tell myself that I will get through this. Just wait and see.”

New life, new challenges You can immediately imagine what Hanna must have been like before the onset of RP. A straight-talking bundle of Berlin-born energy who is unafraid to speak her mind, she will persistently question doctors to learn more about her condition and possible ways to treat it. Or she will champion a charity event in aid of RP-related research. Hanna says she first danced at the age of 13 with friends in Berlin. Her gang would often let off steam at the disco. They later went on to dance in front of audiences, even earning some money to help buy their dancing costumes. All this stopped when Hanna started training for a job, but a fortunate twist of fate allowed her to eventually pursue her passion. She soon began to work part-time as a dance teacher, giving lessons to large groups.

These days, Hanna stays at home most of the time. She has yet to learn how to use a mobility cane. Her future guide dog is currently in training. Hanna likes and enjoys family life with her husband and daughter within her own four walls, where everything is familiar and organized to a tee. But the lack of work or a social life means she often feels lonely. Be that as it may, Hanna has no intention of throwing in the towel. She wants to give dancing lessons (to children) on a regular basis again – and campaign for wider sidewalks in Enkenbach. It is almost impossible for her to go outside alone anymore. Too many cars, she says. While the narrow sidewalks make even a short stroll impracticable. Only with her husband and daughter does Hanna venture far beyond the front door. When she does go outside, she particularly enjoys riding with her husband on the tandem they recently bought. “We are the perfect power couple on our bike,” she laughs. “We regularly strike up conversations with people who keep saying how surprised they are that I am blind.” Few people realize straight away that Hanna can hardly see anything. Her movements – perhaps because she was such a good dancer – are as natural as those of a sighted person. This also poses problems, as Hanna’s husband can testify. When they park their car in a disabled parking space, it is not uncommon for other members of the public to confront them. “People have directed abuse at us on numerous occasions because they thought Hanna wasn’t blind,” her husband says. “That is when I lose my cool.” Everyday life is hard enough as it is. A taxi driver once refused to drive Hanna home from a doctor’s appointment in Frankfurt because he wouldn’t recognize the certificate entitling her to a free ride. Her husband had to clock off work in Philippsburg to come and pick her up. “I was alone on the street and unable to go back into the practice because the building was already locked. It was terrible.” Eventually, another taxi driver agreed to drive her home.

Waiting and hoping But it takes more than that to throw Hanna off her stride. She knows what she wants and is determined to regain at least part of her eyesight and return to some kind of bearable normality. Hanna currently uses special eye-cam glasses to “see” things. If she holds a banknote in front of her eyes, the device’s built-in camera will be able to tell whether it is a 10- or a 20-euro note. Furthermore, the German Federation of the Blind and Partially Sighted will soon be providing her with computer training. Siri, Apple’s AI chatbot, also helps her to stay connected, allowing her to listen to messages and surf online. This is also how she keeps track of the latest medical findings, which give her hope when it comes to innovative ways of treating her disease. There is reason for optimism, because more than 100 clinical trials to treat RP are currently ongoing around the world. Apart from developing new gene therapies, scientists are also looking to use existing drugs or food supplements like N-acetyl-L-cysteine to mitigate or even cure the disease, which affects some 3 million people worldwide. Time is running out for Hanna, who currently uses an electrical stimulation device called OkuStim to contain the condition. Hanna is completely blind in one eye and can only see a bit with the other. And the little she does see is blurred. “I can really only see through a tiny hole and have to try very hard to identify anything at all. But I am clinging on to that dot of light so that I can live independently without too many aids. I am doing everything I can to avoid turning completely blind. Because I simply don’t want to believe that worse is to come.” Hanna receives support from doctors not only in Germany but also in Switzerland at the Eye Clinic of the University Hospital Basel, which is collaborating with the Institute of Molecular and Clinical Ophthalmology Basel (IOB) to develop a novel gene therapy. “It’s good to know that research is continuing and that the doctors in Basel are doing so much to help me get better,” she says. The groundbreaking therapy, for which the IOB laid the groundwork, achieved an important milestone in summer 2024 when the research project was outsourced to RhyGaze AG, the start-up now entrusted with advancing clinical trials. If everything goes according to plan, the method of injecting light-sensitive genetic material into damaged retinas could help Hanna and thousands of other affected patients to regain some eyesight. Hanna has been waiting for little cures like this. “You could say that blind people are waiting all the time. We are waiting and hoping for something to happen. Our life consists of waiting,” she says, with more than a hint of gallows humor. “Certainly, there are worse diseases. But I will be the happiest person in the whole world if I get some of my eyesight back.”