When an eco-activist is diagnosed with a rare disease that limits their mobility, the impact is doubly difficult. Not only does the illness affect their physical health, but being forced to stay at home also disrupts their connection to the environment they worked so hard to protect.
This is exactly what has happened to Tara Matthews, the owner of Echo Ecological and a member of the nonprofit Wildcoast Ecological Society. Matthews has spent the past decade of her life restoring wetlands and protecting wildlife in the Lower Mainland and the South Coast of B.C. She has done extensive restoration work on the North Shore, including the MacKay Creek area and the estuary near Capilano Mall.
“I thought I had sciatica for the last year because I was getting a tingling in my leg,” said Matthews, who lives in New Westminster. “Then, this April, my illness got really bad. I was in extreme pain, couldn’t walk or stand and was having muscle spasms. So, I went to the emergency room, and they gave me an MRI. That’s when I found out I had these Tarlov cysts on the nerves in my spine.”
Tarlov cyst disease is an extremely painful health condition, which, for unknown reasons, primarily affects women.
Matthews said she hasn’t been receiving adequate medical help except for different pain medications and feels she has to manage her condition largely on her own.
“I was referred to a neurosurgeon in New Westminster – one of only two doctors in Canada who know anything about this condition – but my appointment isn’t until August 2026, and it’s just a phone appointment, not an in-person one.”
Like many individuals who find themselves grappling with complex medical conditions and little support, Matthews took to the Internet in search of answers. She came across a Facebook group where people with the same rare disease shared experiences.
There are probably only four doctors worldwide who specialize in surgery for Tarlov cysts, she said. One of them is Dr. Frank Feigenbaum, an American who has dedicated his career to Tarlov cysts and offers surgery to international patients at a hospital in Cyprus.
Facing a lack of medical assistance locally and unwilling to wait two years for consultation while enduring severe pain and immobility, Matthews discussed her condition with Dr. Feigenbaum. He confirmed her illness and deemed her a candidate for surgery.
Noting that Dr. Feigenbaum is a world-renowned expert, having done about 7,000 of these surgeries, Matthews said, “The only problem is that our medical system doesn’t cover any out-of-country medical treatments, so I would have to pay all out of pocket.”
Matthews emphasized that she has spoken to several Canadian women who underwent surgery with this American doctor. They reported paying $85,000 out of pocket, but all agreed that the expense was worthwhile, as it significantly restored their quality of life.
“I really want to get back to doing all the good work that I’ve been doing for years and years, but this illness is really preventing me from doing that,” she concluded. Donations can be made at through GoFundMe.
Fatemeh Falah is an intern reporter with the North Shore News. She can be contacted at [email protected].
