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. Her journey to reclaim her vision is a testament to the power of specialized care and the impact it can have on an individual's life.
Lisa's story began in 2004 when she first noticed changes in her eyes. The symptoms gradually worsened, leading to sudden, intense pain spikes. It was a daily battle, and yet, despite her persistent search for help, she often felt misunderstood and redirected by physicians.
But here's where it gets controversial: 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. However, Lisa's case was unique, and it wasn't until 2017 that the true underlying cause was uncovered.
Lisa was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS), an inherited condition affecting collagen and impacting various body systems, including vision. EDS affects proprioception, our sense of body awareness, which can lead to clumsiness and frequent accidents, as Lisa experienced. She would often walk into doorways or hit furniture, and even simple tasks like taking off a shirt could result in unexpected injuries.
EDS can also cause flexible joints, stretchy and fragile skin, and tissue weakness. Additionally, individuals with EDS often experience 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 over time.
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. Finally, she felt supported and understood.
Dr. Kherani, a glaucoma and cataracts surgeon, emphasized the importance of recognizing the higher risk of complications in patients like Lisa. He explained, "We are going to try our best to do what's in their very best interest." And he delivered on that promise.
In 2024, Lisa underwent two surgeries: a combined cataract and glaucoma surgery in April, followed by another cataract surgery in September. Dr. Kherani performed a minimally invasive glaucoma surgery, a technique that provides effective pressure control with minimal trauma, which is crucial for patients with EDS.
Minimally invasive glaucoma surgery optimizes the body's existing drainage system, unlike traditional surgeries that create a new one. This approach, available at Toronto Western Hospital for almost a decade, allows for earlier and safer treatment of glaucoma.
Today, Lisa's cataracts and glaucoma are managed, and she has completely recovered. Her vision is stable, and she's no longer at risk for these secondary complications of EDS. Lisa is now rediscovering her hobbies, riding her recumbent trike and exploring flower pressing, activities she couldn't enjoy for years.
"Life still has challenges," Lisa says, "but these surgeries gave me hope."
January is Glaucoma Awareness Month, and it's a reminder that nearly 800,000 Canadians live with this condition, which is 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 raise awareness and support specialized care for conditions like glaucoma and EDS. Together, we can make a difference and redefine healthcare.
