Beyond Glaucoma: Empowering Lives Through Community
By: Nita Sinha, Director of Public Health at Prevent Blindness
A chronic disease, especially a progressive one such as glaucoma, can alter an individual’s life in unwelcomed ways. Anxiety, grief, denial, and depression can compound the physical symptoms and any accompanying financial burden. Loss of vision, and fear of further impairment, can diminish one’s sense of independence and lead to social withdrawal and isolation.
Research shows that humans are hardwired to connect with each other, and that the absence of social connection poses a greater risk to overall health than smoking, obesity, and hypertension.
Support groups can bridge gaps in social engagement by bringing together individuals to connect around common health issues. Participants share their experiences and advice, along with providing a source of support. Studies have shown that online patient communities provide benefits where users can:
- Minimize feelings of loneliness, isolation, and stigma;
- Reduce anxiety, depression, and fatigue;
- Improve coping skills;
- Instill a sense of self-worth and empowerment;
- Facilitate better health condition management; and
- Increase confidence when talking with health care providers.
Since its launch in 2020, the Glaucoma Community, a free online community available via mobile app or web browser for Apple or Android users through Prevent Blindness and Responsum Health, has helped thousands of glaucoma patients and their care partners. This community has reached more than three million people looking for a source of support and answers online.
Glaucoma is often referred to as the “silent thief of sight,” because symptoms can begin gradually, usually affecting peripheral vision first. Late in the disease, glaucoma may cause “tunnel vision.” However, even central vision can be seriously damaged. Once vision is lost to glaucoma, it cannot be restored.
Many members of the Glaucoma Community have reported increased levels of confidence in their knowledge and management of glaucoma after only a few weeks of using it. Online communities like this one can provide reliable, vetted information in multiple languages about:
- The basics of glaucoma and related eye disorders;
- Recent research findings;
- Practical tips for the newly-diagnosed;
- Myths and misconceptions;
- Questions to ask your doctor, and more.
By learning more about glaucoma and knowing what questions to ask, individuals can gain the confidence to have important, focused, and productive conversations with their health care provider, make informed decisions, and participate more in their own care.
“This community is so supportive and informative! Thanks for the list of questions to ask the ophthalmologist. It really helped empower me to ask questions.”
— Lorraine, The Glaucoma Community Member.
Navigating the journey through a chronic, progressive disease can feel easier when there is a compassionate, empathetic community cheering you on.