Jennifer Brady of Halifax has lymphedema, a disease that causes an accumulation of fluid and can cause painful swelling, increased risk of skin infection and sepsis, and hardening of the skin.
Crystal Ellingsen, of the Spryfield neighbourhood of Halifax, has lipedema, a condition that causes an excess buildup of fat in the legs and arms that causes pain, swelling and easy bruising.
Brady and Ellingsen have both tried treatments other than surgery to manage their conditions, but they say those techniques are only designed to treat the symptoms rather than their cause.
They say surgery is required to limit or stop the progression of their diseases and avoid further deterioration of their quality of life and future expenses to the Nova Scotia medical system.
The judicial review request, filed in the Supreme Court of Nova Scotia on July 22, says the province has told Brady and Ellingsen they need an opinion from a provincially licensed specialist in their conditions that supports their request for out-of-country treatment. But in both cases, they said no such specialist exists.
“It’s impossible criteria to meet,” Brady says. “Not just hard, but literally impossible.”
Brady began experiencing swelling in her legs after undergoing a radical hysterectomy to treat cervical cancer in 2019. The surgery involved removing lymph nodes, which can lead to lymphedema in some patients.
She has treated the swelling with a combination of compression stockings, a type of massage called manual lymphatic drainage, self-massage and by wearing a pair of inflatable pants for up to three hours a day that moves fluid in the legs to improve drainage.
Despite those techniques — some of which are not covered financially by the province — Brady says she still suffers from debilitating pain caused by the swelling and tissue damage. Once a daily runner, the single mother of two now must carefully apportion the amount of time she spends on her feet each day.
“Honest to God, there’s days where the pain, the constant pain, is so bad, I feel like I should just kill myself. Because what else am I supposed to do? Live in constant pain for the rest of my life?”
Last November, Brady ended up in hospital with a skin infection that led to a blood infection — a potentially fatal condition that can occur repeatedly in people with lymphedema.
She learned of a surgery called lymphovenous anastomosis that can greatly improve lymphedema symptoms — for some, permanently. However, the surgery is not available in Nova Scotia, and surgeons who perform it elsewhere in Canada have wait-lists of several years.
Brady found a doctor in Japan willing to perform the surgery, and asked MSI to cover the cost of about $80,000. She was told she needed an opinion from a specialist in the province supporting her request for treatment, but there is no lymphedema specialist in the province.
She asked the Health Department to review MSI’s decision, but it, too, refused to approve funding.
So, in June, Brady travelled to Japan, paying for the surgery herself by remortgaging her home. It’s made a “massive” difference, she says, reducing the swelling and alleviating some of the worry about a recurrence of a blood infection.
“The dark place that I was in is not completely over, but it’s like, I feel a little bit more hopeful.”
‘We have nothing’
Ellingsen has not yet taken the step of going abroad for surgery for lipedema, though she has found a doctor willing to perform it on her at a hospital in Germany.
The surgery would remove the diseased tissue, which does not respond to diet or exercise, and would relieve chronic pain, swelling and stress on Ellingsen’s joints. Each surgery would cost $12,000, not including travel, and Ellingsen says she would need four or five rounds of the surgery.
Like Brady, she has been told she needs a referral from a specialist in lipedema. Since none exists, MSI suggested getting a referral from a particular plastic surgeon. However, that surgeon told her he is not currently seeing lipedema patients, and it would be five years before he could see her. Ellingsen said every other plastic surgeon she has contacted has told her they do not treat lipedema, or they do not treat people with her body mass index.
She, too, appealed MSI’s decision, but the Health Department rejected her request to cover out-of-country surgery.
“We have nothing,” she said of people with lipedema in the province. “And I’d almost say less than nothing because at every turn I make to try to get some recognition and try to get care, there is a door slammed in my face.”
In the meantime, Ellingsen continues to use compression garments and massage therapy to treat her condition.
She says if she has to, she will take out a mortgage on her home to pay for the surgery. But she says the onus should be on the province.
“The lack of understanding and the failure of our health-care system to address this issue doesn’t negate my need for care.”
Both women say if patients like them don’t get surgical treatment, there will likely be a significant cost to the Nova Scotia health-care system in the future, including for joint replacement surgery, in Ellingsen’s case, and emergency treatment for blood infection, in Brady’s case.
In an emailed statement, Health Department spokesperson Khalehla Perrault said there are specialists in Nova Scotia who provide care for lipedema and lymphedema patients, and that if a specialist determines that treatment options outside the province or country are appropriate, they can make a request to MSI seeking approval.
Perrault said MSI does not approve treatment outside the province or country without a referral and prior approval.
In their judicial review request, the women ask for the Health Department’s decision to be quashed, and “other relief” as the court determines and legal costs.
Both want the province to cover the costs of their surgeries and to improve the care options and policies to allow people to access the specialists and treatment they need.
Brady wants an apology from the Health Department and Health Minister Michelle Thompson.
“The pain and suffering that I’ve been through for well over a year now has been devastating to my life. And I’ve been left with permanent tissue damage, and I believe that I’m due some reparations for that.”
Brady also wants more research into lymphedema in the province and both say more health coverage should be available for treatments such as compression garments.