For the first time, Lisa Carnevale felt genuinely heard and understood in her search for answers.
Lisa first noticed changes in her eyes in 2004, when she experienced intense dryness, blurry vision and extreme light sensitivity. It gradually progressed to sudden, intense spikes of pain.
“It felt like I was living with sand in my eyes," says Lisa.
In 2009, Lisa was diagnosed with a specific type of secondary angle closure glaucoma.
Glaucoma is a progressive disease. As pressure fluctuates in the eye, it can lead to advanced damage to the optic nerve, loss of nerve fibres and may lead to blindness in some individuals.
At the time, she received laser iridotomy in both of her eyes, a quick eye procedure that uses a laser to create a tiny hole in the iris to improve fluid drainage.
Despite this treatment and her persistent search for help, Lisa was still struggling and spent years being redirected by physicians.
It wasn't until 2017 that things finally began to make sense.
Lisa was diagnosed with hypermobile Ehlers-Danlos syndrome, the most common type of EDS, which is a group of inherited conditions that affects collagen, impacting ligaments, tendons, joints, discs, spine, organs and blood vessels.
"Growing up, people always said I was clumsy, but it was the condition," says Lisa. “EDS affects your proprioception, which is our sense of knowing where your body is in space.
"I often walked into doorways, slammed my shoulders or elbows, or hit furniture when moving around. Even taking off a shirt could result in hitting my elbow on a table because my brain didn't register where things were."
People living with EDS tend to have flexible joints, stretchy and fragile skin, tissue weakness, and comorbidities, such as mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS).
For many, vision complications can also emerge over time.
In 2023, after doing extensive research on EDS and seeing ophthalmologists in Toronto who had experience treating glaucoma patients with EDS, Lisa received a referral to Dr. Irfan Kherani's clinic at UHN's Toronto Western Hospital.
"I'd seen 15 other ophthalmologists between 2004 and 2023, most of whom reassured me that nothing seemed wrong with my eyes and suggested it might just be migraines," says Lisa.
"But with Dr. Kherani, I felt supported from the very first appointment. He was so pleasant with every single patient that I honestly couldn't wait to meet him."
Vision conditions caused by EDS are unique. The ligaments that support the lens inside the eyes are weak, causing myriad symptoms that can be associated with significant pain that comes and goes, making it particularly hard to diagnose and manage.
Not everyone with EDS will have an eye disorder, but for many, it can lead to common issues like severe dry eyes, glaucoma, cataracts and retinal diseases.
In Lisa's case, she developed a complex cataract and glaucoma.
"The most important thing that I always let my patients know is that we are going to try our best to do what's in their very best interest," says Dr. Kherani, a glaucoma and cataracts surgeon at UHN's Donald K. Johnson Eye Institute.
"Especially with cases like Lisa's, it's crucial that we are recognizing that she's at higher risk for complications with surgery. We'll find out about everything that we need to know in advance to help make sure it goes smoothly."
In 2024, Lisa underwent two surgeries: one 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 an important consideration for patients with EDS.
Minimally invasive surgery helps to optimize the body's existing drainage system. Unlike traditional glaucoma surgeries, where a whole new drainage system is created in the eye, minimally invasive glaucoma surgery is performed with small incisions or microscopic implants in the eye.
"We are really lucky at Toronto Western Hospital, where we've been doing minimally invasive glaucoma surgery for almost a decade," says Dr. Kherani. "Because of that, we're able to treat glaucoma earlier and more safely."
Today, both Lisa's cataracts and glaucoma have been managed. She has completely recovered from her cataracts, her glaucoma is stable, and she's not likely to be at risk for these secondary complications of EDS.
Now that her vision is better, Lisa is rediscovering hobbies.
"I love riding my recumbent trike, usually 40 to 50 kilometres, five to seven times a week in good weather. I'm also exploring flower pressing again and other hobbies, which I couldn't do for years," says Lisa.
"Life still has challenges, but these surgeries gave me hope."
January is Glaucoma Awareness Month. Nearly 800,000 Canadians are living with glaucoma, and it is the second leading cause of blindness around the world.
Vision diseases like glaucoma cause irreversible damage to the eyes and there is currently no cure. However, early prevention and diagnosis can help slow down or prevent vision loss. Over 75 per cent of vision loss is preventable or treatable with early intervention by receiving regular eye examinations.
