Where retinal care meets real talk on the mind behind the macula.
In a field where innovation often takes center stage, one recent Foundation Fighting Blindness (FFB) webinar gently reminded attendees that sometimes the most impactful intervention isn’t a device or drug. It’s acknowledgement.
On November 11, 2025, the “Seeing Beyond Vision Loss: A Focus on Mental Health Resources for Patients with Retinal Disease” session gave some long-overdue airtime to the emotional and psychological realities that accompany progressive vision loss.1
Moderated by Michelle Glaze (USA), director of Professional Outreach at FFB, the webinar brought together insights from patient advocate Jessie Wolinsky (USA), retina specialist Dr. Sandeep Grover (USA) and clinical psychologist Dr. Ann Wagner (USA).
Across the hour-long discussion, the speakers emphasized a core message: mental health support should be woven into retinal care early and consistently, alongside diagnosis, counseling and low-vision services.
The patient’s perspective
A disability advocate, podcaster and co-founder of Sight Club, Wolinsky opened with a candid personal reflection. Diagnosed with retinitis pigmentosa (RP) at age seven, she shared how her understanding of the disease shifted dramatically in adolescence.
“I truly took it as (something) of a death sentence,” Wolinksy recalled. She described how therapy and the FFB community helped her regain confidence and reshape her outlook as a blind person.
“You don’t want anyone to leave your office without resources in their hand and truly hope in their heart that this is not going to be the end of their world,” she advised.
Wolinksy encouraged ophthalmologists to:
- Acknowledge patient fears as early as possible
- Discuss emotional wellbeing alongside clinical findings
- Offer resources such as available therapists, psychologists and support groups
- Connect patients with community organizations like FFB
The physician’s perspective
Next, Dr. Grover, professor and retina specialist at the University of Florida in Jacksonville, highlighted the importance of recognizing the psychological burden of inherited retinal diseases—a burden he believes remains substantial and widely overlooked. When he joined the university in 2005, he established an inherited retinal disease (IRD) clinic through an FFB grant.
“Inherited retinal diseases…cause progressive and mostly untreatable vision loss,” Dr. Grover explained. “So this is a psychological burden that is very substantial but often underrecognized.”
He shared findings from two studies conducted with his team. In one, involving 38 patients with RP, about half reported some level of depression, particularly those with visual acuity of 20/200 or worse (legally blind) or those living alone.2
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A second study of 43 patients assessed depression, anxiety and resilience. While roughly a third were taking medication for anxiety or depression, none met the criteria for severe depression, and average resilience scores (80 out of 100) were nearly identical to the U.S. population average (79).3
These insights suggest that while many patients demonstrate notably psychologically strength, they still need clinicians to proactively address mental health. To guide his approach, Dr. Grover uses his “3E” framework: Enquire, Educate, Empower.
- Enquire. Ask open questions that allow patients to articulate concerns more naturally. For example, ask about daily activities instead of inquiring, “Are you depressed?”
- Educate. Clarify misconceptions about prognosis. He noted among 2,000 RP patients, only six were totally blind in both eyes; complete darkness is rare, though many meet legal blindness criteria.
- Empower. Connect patients with genetic testing, low-vision care, support networks and programs such as My Retina Tracker.
Moreover, Dr. Grover emphasized the need to look beyond clinical measurements and consider how patients feel, not just how they see.
His philosophy is very simple: “My slogan is ‘No IRD family left behind.’”
The psychologist’s perspective
Dr. Wagner, a board-certified clinical psychologist, brought a dual vantage point: she is both a mental health professional and a person with RP. With a family history of autosomal dominant RP, she described having grown up in a “blind culture.”
Referencing Centers for Disease Control and Prevention (CDC) data, she noted that individuals with vision loss face increased risks of physical injury, social isolation and poor mental health. The CDC estimates that one in four people with vision loss are at risk of clinical levels of anxiety or depression.
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Dr. Wagner outlined key contributors to that risk: loss of independence, loneliness, fears of becoming a burden, fear of falling, employment concerns and the social stigma that can erode self-esteem.
Even when practical adaptation is going well, she said, the emotional world of vision loss can remain profound. “The emotional world of vision loss is big, or can be big,” she explained. Grief may ebb and flow as vision changes over time.
To help clinicians think more comprehensively, Dr. Wagner introduced a three-area framework for supporting patients as they adjust to vision loss:
- Eye care and genetics: guidance from retinal specialists and genetic counselors
- Low-vision rehabilitation: mobility, orientation and daily living training
- Emotional and psychological support: therapy, support groups and a safe space to process grief
If one leg of that structure is missing, she explained, adjustment becomes significantly harder.
Dr. Wagner added that many patients are too overwhelmed at diagnosis to absorb information. She encouraged clinicians to offer follow-ups, offer accessible written materials and reinforce key points as needed.
Above all, she stressed early mental health referrals, not just when symptoms escalate. She highlighted resources like the FFB Mental Health Resource Center, home to approximately 95 trained therapists.
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As she reminded participants, “A little compassion goes a long way.” Even a simple acknowledgement, “We don’t want you to feel like you have to do this alone,” can help patients feel supported.
The takeaway
In the end, the webinar underscored a straightforward truth: while diagnostics and treatments continue to advance, patients also need empathy, communication and consistent support. By recognizing the emotional realities of progressive vision loss, ophthalmologists can help ensure that their patients aren’t just navigating blindness—they’re doing so with guidance, resilience and a sense that their clinicians truly see them.
References
- Foundation Fighting Blindness. Seeing Beyond Vision Loss: A Focus on Mental Health Resources for Patients with Retinal Disease [webinar]. November 11, 2025.
- Humphries A, Bowman L, Grover S, et al. Quality of life analysis in patients with retinitis pigmentosa. Ophthalmic Res. 2024;67(1):348-357.
- Grover S, Hamdani GS, A BKM, et al. Psychosocial effects in patients with retinitis pigmentosa (RP). IOVS. 2020;61(7):2770270.