Revolutionizing her vision: How specialized care for glaucoma and cataracts transformed Lisa's life
Imagine living in a world where your vision is clouded by uncertainty and pain. This was the reality for Lisa Carnevale, who finally found understanding and support in her long journey to reclaim her sight.
Lisa first began to notice troubling changes in her eyesight back in 2004. She experienced extreme dryness, blurred vision, and heightened sensitivity to light, which eventually escalated into sudden episodes of intense pain. “It felt as if sand were constantly in my eyes,” she recalls, expressing the discomfort that permeated her daily life.
In 2009, medical professionals diagnosed Lisa with a specific form of secondary angle closure glaucoma, a progressive eye condition characterized by increased pressure inside the eye. This pressure can damage the optic nerve, causing loss of nerve fibers, and in severe cases, lead to blindness.
To address this issue, Lisa underwent laser iridotomy, a procedure that uses a laser to create a small hole in the iris, thereby improving fluid drainage in the eye. However, despite this intervention and her relentless pursuit of help, she continued to face challenges, being redirected by various doctors over the years without clear solutions.
Everything changed in 2017 when she received a diagnosis that finally made sense: hypermobile Ehlers-Danlos syndrome (hEDS), the most prevalent type of EDS. This genetic disorder affects collagen, which plays a vital role in the structure of ligaments, tendons, joints, organs, and blood vessels. “Growing up, I was often told I was clumsy, but it was really due to this underlying condition,” Lisa explains. “EDS impacts proprioception, or our ability to understand where our body is in space.”
She reminisces about how she would frequently bump into doorways, misjudge her movements, and even injure herself while performing simple tasks like putting on a shirt. Individuals with EDS typically have hyper-flexible joints, fragile skin, and may experience a range of additional health issues, including mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). Over time, these complications can extend to vision problems as well.
After conducting thorough research on EDS and consulting with ophthalmologists in Toronto familiar with treating EDS-related glaucoma, Lisa was referred to Dr. Irfan Kherani at the UHN’s Toronto Western Hospital. “Between 2004 and 2023, I had seen 15 different ophthalmologists, most of whom reassured me that my eyes appeared fine and suggested migraines might be the cause,” she shares. However, her experience was markedly different with Dr. Kherani. "From our very first meeting, I felt truly supported. He treated every patient with such kindness that I was excited to meet him."
The visual complications associated with EDS are quite distinct. Weak ligaments supporting the lens in the eyes can lead to a variety of symptoms, often accompanied by fluctuating pain, complicating diagnosis and treatment. While not everyone with EDS will develop eye disorders, many may face common conditions such as severe dry eyes, glaucoma, cataracts, and retinal diseases. For Lisa, this meant grappling with both complex cataracts and glaucoma.
Dr. Kherani emphasizes, “The most important thing I want my patients to know is that we are committed to doing what is best for them.” He acknowledges the heightened risk of complications in cases like Lisa’s and stresses the importance of gathering all necessary information beforehand to ensure a smooth surgical process.
In 2024, Lisa underwent two significant surgeries: a combined cataract and glaucoma operation in April, followed by another cataract surgery in September. Dr. Kherani utilized a minimally invasive approach for her glaucoma treatment, which allows for effective pressure management with minimal disturbance to the eye—an essential factor for those dealing with EDS.
This technique optimizes the body's natural drainage systems rather than creating a new one, which is common in traditional glaucoma surgeries. “We are fortunate at Toronto Western Hospital to have been performing minimally invasive glaucoma surgery for nearly a decade,” Dr. Kherani notes. “This expertise allows us to treat glaucoma earlier and with greater safety.”
Today, Lisa celebrates the successful management of both her cataracts and glaucoma. She has fully recovered from the cataract surgery, her glaucoma remains stable, and she no longer faces potential complications stemming from EDS. With her vision restored, Lisa is rediscovering her passions. “I enjoy riding my recumbent trike, cycling distances of 40 to 50 kilometers five to seven times a week when the weather permits. I’m also revisiting hobbies like flower pressing, which I hadn’t been able to do for years,” she shares enthusiastically.
“Life presents its challenges, but these surgeries have given me hope.” January is recognized as Glaucoma Awareness Month, highlighting that nearly 800,000 Canadians live with this condition, which ranks as the second leading cause of blindness globally.
Diseases like glaucoma inflict irreversible damage on the eyes, and as of now, there is no cure. However, early diagnosis and preventative measures can significantly slow or even avert vision loss. It’s noteworthy that over 75 percent of vision impairment can be prevented or treated through timely interventions, underscoring the importance of regular eye exams.
No one achieves monumental change alone, but through collaboration among the dedicated team at UHN and the generous support from donors, we can collectively reshape the landscape of healthcare.
