In a world often seen through clear and unobstructed lenses, Stephan Hüsler’s life has been marked by an evolving perspective—a journey from the clarity of a bank teller’s vision to the blurred reality of a rare eye disease, culminating in his leadership of Retina Suisse. As the Managing Director of Retina Suisse, the only patient association in Switzerland dedicated to eye diseases, Megan Webber, Co-founder of KnowTheGlow, was fascinated to learn of Stephan’s story which is one of resilience, transformation, and a deep commitment to those who share his visual struggles.
Retina Suisse traces its roots back to 1979 when it was founded by a group of individuals affected by retinitis pigmentosa (RP), a degenerative eye disease that leads to vision loss. Over the years, under the leadership of Christina Fasser, who served as president for an incredible 30 years, the organization grew and adapted. What began as a small community of RP patients expanded its scope as new treatments for age-related macular degeneration (AMD) emerged towards the end of the 20th century. This pivotal shift prompted the organization to broaden its focus, addressing a range of retinal diseases and rebranding itself as Retina Suisse.
Today, Retina Suisse stands as a beacon of hope for those living with retinal conditions, providing support, information, and advocacy for its 1600 active members, which include patients, families, and friends. Additionally, 1700 donors support the organization’s mission. To reach a diverse audience across Switzerland, Retina Suisse produces content in three languages—German, French, and Italian—reflecting the linguistic diversity of the nation.
Stephan’s connection to Retina Suisse is deeply personal. For 23 years, he worked with UBS as a bank teller, a job that required precision and attention to detail. However, as his vision began to deteriorate, Stephan realized something was wrong. Despite an initial diagnosis of myopia and astigmatism, his vision continued to worsen. It wasn’t until January 30, 2001—a date he now considers his “second birthday”—that he received a definitive diagnosis of retinitis pigmentosa.
This diagnosis marked a turning point in Stephan’s life. He reached out to Retina Suisse, where he met Christina Fasserand became involved with the organization. As his condition progressed, Stephan faced new challenges in his professional life. By 2006, his visual field had narrowed to just 14 degrees, making it impossible for him to perform tasks such as reading signatures—a crucial part of his job. In response, Stephan began to explore adaptive technologies, including braille, screen readers, and other tools that would allow him to continue working independently.
In 2008, Stephan embarked on a new journey, training in social work and learning to use assistive technology to maintain his independence. By 2013, he had completed his training, and his role within Retina Suisse grew. Between 2009 and 2014, Stephan served as the president of the organization, and when Christina Fasserretired, Stephan stepped into the role of Managing Director—a position he has held with distinction, though he plans to retire by the end of next year.
Under Stephan’s leadership, Retina Suisse has continued to evolve, reflecting his deep understanding of the needs of patients living with retinal diseases. Stephan’s unique perspective, shaped by his own experiences, has been instrumental in fostering a community where patients can find support, share experiences, and gain access to the latest medical advancements.
Retina Suisse organizes conferences across Switzerland, addressing topics ranging from inherited eye diseases to genetic testing, all presented in the country’s three main languages. These events are designed with patients in mind, breaking down complex medical information into accessible terms.
Stephan’s dedication to the Retina Suisse community is evident in his advocacy for younger members. He has championed the creation of Retina Suisse Youth, a group focused on supporting the next generation of patients and ensuring they have access to the resources and hope they need to thrive. His vision for RetinaSuisse extends beyond Switzerland, as he actively supports participation in international conferences, such as the Retina International World Congress held every two years.
Retina Suisse is more than just an organization; it is a network—a lifeline for those navigating the challenges of retinal diseases. Stephan’s journey, from a bank teller to a social worker and then to leader of Retina Suisse, mirrors the transformative power of this network. Stephan explained to Megan that when they hold in-person conferences, members can talk to other members to share about their real world challenges and triumphs. They are not sad meetings; they are quite happy, and the people are interested and inspired. When Stephan and his wife first participated in the 2002 general assembly, they were overwhelmed with joy at how uplifting the entire experience was. This was especially impactful given how newly diagnosed he was at the time. Through his work guiding the organization, Stephan has continued this tradition and the result is that Retina Suisse has not only enriched his life but also the lives of countless others who now see a future filled with hope beyond the difficult prognosis of their diagnosis.
As Stephan prepares to step down from his role, his legacy within RetinaSuisse is secure. His story is a testament to the strength of the human spirit and the importance of building communities that uplift and support one another. For Stephan, the message is clear: even in the face of progressive visual impairment, independence and a life of extraordinary fulfillment are well within reach.
