Imagine waking up every day, feeling like you're living with a constant, irritating grit in your eyes. This was the reality for Lisa Carnevale, who, for over a decade, struggled with intense dryness, blurred vision, and extreme light sensitivity. It was a daily battle that gradually worsened, leading to sudden, intense pain spikes.
"It was like having sand in my eyes all the time," Lisa recalls. But here's where it gets controversial... or at least, where the journey towards a diagnosis began.
In 2009, Lisa was diagnosed with a specific type of secondary angle closure glaucoma. Glaucoma, a progressive disease, can lead to advanced damage to the optic nerve and potential blindness. Lisa underwent laser iridotomy, a quick eye procedure, to improve fluid drainage. However, despite this treatment, she continued to face challenges and was often redirected by physicians.
It wasn't until 2017 that a significant breakthrough occurred. Lisa was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS), an inherited condition affecting collagen and impacting various body systems, including vision.
"Growing up, I was always told I was clumsy. Little did I know, it was EDS affecting my proprioception," Lisa explains. Proprioception, our sense of body awareness, can be disrupted in EDS, leading to clumsiness and frequent collisions with objects.
EDS can also cause flexible joints, stretchy and fragile skin, and tissue weakness. Additionally, it often comes with comorbidities like mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). And this is the part most people miss: EDS can also lead to vision complications.
After extensive research and consultations with ophthalmologists experienced in treating glaucoma patients with EDS, Lisa was referred to Dr. Irfan Kherani's clinic at Toronto Western Hospital in 2023.
"I felt supported from the very first appointment with Dr. Kherani. He was so pleasant and understanding," Lisa says. Dr. Kherani, a glaucoma and cataracts surgeon, specializes in treating unique vision conditions caused by EDS.
"The ligaments supporting the lens inside the eyes are weak in EDS patients, leading to various symptoms and significant pain," Dr. Kherani explains. This makes diagnosis and management particularly challenging.
Not everyone with EDS will have eye disorders, but many experience issues like severe dry eyes, glaucoma, cataracts, and retinal diseases. In Lisa's case, she developed a complex cataract and glaucoma.
"We always aim to do what's in our patients' best interest, especially with higher-risk cases like Lisa's," Dr. Kherani emphasizes. "We ensure we know everything in advance to make the surgery as smooth as possible."
In 2024, Lisa underwent two surgeries: a combined cataract and glaucoma surgery in April and another cataract surgery in September. As part of her glaucoma treatment, Dr. Kherani performed a minimally invasive glaucoma surgery, a technique that provides effective pressure control with minimal trauma, which is crucial for EDS patients.
Minimally invasive glaucoma surgery optimizes the body's existing drainage system, unlike traditional surgeries that create a new drainage system in the eye. "We're lucky at Toronto Western Hospital to have been doing this for almost a decade, allowing us to treat glaucoma earlier and more safely," Dr. Kherani adds.
Today, Lisa's cataracts and glaucoma are managed, and she has fully recovered. Her glaucoma is stable, and she's no longer at risk for these secondary EDS complications.
"Now that my vision is better, I'm rediscovering hobbies. I love riding my recumbent trike, and I'm exploring flower pressing again," Lisa shares. "These surgeries gave me hope. Life still has challenges, but my vision is no longer one of them."
January is Glaucoma Awareness Month, a reminder that nearly 800,000 Canadians live with glaucoma, the second leading cause of blindness worldwide. Vision diseases like glaucoma cause irreversible damage, but early prevention and diagnosis can slow down or prevent vision loss. Over 75% of vision loss is preventable or treatable with early intervention and regular eye examinations.
So, let's spread awareness and support those living with glaucoma and other vision diseases. Together, we can make a difference.
