Tarlov cysts (also known as meningeal or perineurial cysts) are fluid-filled sacs found at the spine’s nerve roots, usually in the tailbone area. They are present in an estimated five to nine per cent of the general population, though women, for unknown reasons, are much more likely to get Tarlov cysts — three research papers on the subject report that women make up about 70 per cent, 88 per cent, or 90 per cent of Tarlov cyst cases. The cysts are typically benign, producing no symptoms.

But in rare cases, they can become symptomatic. This often follows traumatic incidents such as falls, automobile accidents, heavy-lifting injuries, and childbirth. According to research published in the International Journal of Physical Medicine and Rehabilitation in 2017, 16.7 percent of Tarlov cyst patients reported that trauma was the trigger that elicited or aggravated their symptoms.

The first symptoms are usually present long before an official diagnosis of symptomatic Tarlov cyst disease. Cerebrospinal fluid, the liquid that cushions the brain and spinal cord, flows into these cysts, causing them to expand. As the cyst grows larger, pressure on the nerves becomes progressively worse, and neurological symptoms appear. Patients with Tarlov cyst disease often experience back and leg pain, as well as a burning sensation and numbness in the lower limbs, sensory disturbances, abnormal urination and defecation, and sexual dysfunction. The wide variety of symptoms and rarity of the disease can lead to misdiagnosis.

“That week in April, I ended up going to the emergency four different times because I wasn’t getting any adequate medical help. They just kept offering me different pain medications. I think that most doctors don’t know anything about this illness, so they don’t know how to treat it,” said Tara.

Like many others dealing with complex medical conditions, Tara turned to the Internet for answers. She found a Facebook group where people experiencing the same pain from this rare disease shared their stories. It was there that she connected with Vera Cheng and Kayla.

Kayla, who asked that her last name be withheld, first experienced symptoms two years ago at the age of 32 after helping lift a patient at the hospital where she was working. She did not disclose her job title at the hospital but mentioned that she has quit her job.

Kayla had pain in her lower back for the first three months, but the symptoms then progressed into her groin and down her legs. “It feels like I have a 24/7 buzzing sensation or an internal vibration,” she said. “I have pain at the bottom of my feet, like a burning sensation in my toes. It’s hard to sit. The pain flares up when I’m standing or walking, which has really reduced my mobility. Once the pain flares up, it takes a long time for it to go back down.”

She says there are seven to eight cysts in her sacrum, a triangular bone at the base of the spine, just above the tailbone. Asked about when she received a formal diagnosis, Kayla replied, “I have not had ‘Tarlov cyst disease’ written down on any paperwork as a diagnosis. I have a mixed bag of Canadian doctors, some acknowledging that I have symptomatic Tarlov cysts causing pain and neurological symptoms like radiculopathy in my legs and feet, while others dismiss the cysts entirely. I don’t think I have ever spoken to a Canadian patient who has had a doctor write ‘TCD’ down as a formal diagnosis.”

Kayla has spoken to a neurologist, three Canadian neurosurgeons, her family doctor, an anesthesiologist, and several nurse practitioners in total.

Vera Cheng is 40 years old and used to work as a social worker. She first had symptoms of the disease after a car accident six years ago. Her flare-ups now bring on “excruciating, crushing pain, as if a concrete pillar is pressing down on me,” she said.

“Every time you think that the pain can’t be worse than this, it gets worse. And then, you think it’s just a flare-up, but then the flare-up becomes your new baseline.”

Pain has impacted every part of her life. “What do you do on a day-to-day basis that requires sitting? Everything,” she said. “You sit to work, to go to school, to drive, to have dinner with friends. But if you can’t sit, how do you do all those things? As walking becomes harder, you walk less and less. You can’t sit to drive, and now you can’t walk to get anywhere. Your world gets smaller and smaller.”

When Vera first reported her symptoms to her now-former doctor, nothing was done for her. As her condition worsened, she reported her symptoms again, and still, nothing was done. Eventually, she saw a doctor who recommended scans, and the scans revealed multiple large cysts.

“There was nothing further here,” she said. “Nobody suggested treatment. Nobody acknowledged that they could be symptomatic, because the history of it is that many radiologists see these on scans. They think they’re asymptomatic and incidental. I was fortunate that the radiologists acknowledged my cysts on the scan. Since the cysts were so big, I didn’t experience the runaround that many patients face. While the damage done by these cysts was clearly documented, I still couldn’t get the help I needed. In fact, the most devastating part is watching your body get worse and worse with very serious neurological symptoms and not being able to get any help.”

Eventually, Vera was referred to specialists, but they would not see her. “My referral was just rejected. I was one of the ones that they didn’t even bother to see,” she recalled. Tara said she was referred to a neurosurgeon in New Westminster, but her appointment wasn’t until August 2026, and it was just a phone appointment, not in-person care.

Without proper acknowledgment of their cysts, patients may be misdiagnosed with unrelated conditions, which might lead to unnecessary and invasive treatments. According to Kayla, who tracks the experiences of Tarlov cyst sufferers online, many patients are even told their symptoms are “all in their head”; they might falsely be labelled with psychiatric disorders.

“They will just say that the woman’s basically crazy. They’ll diagnose them with, like, fibromyalgia or functional neurological disorder or depression and anxiety. Or they’ll just say women are malingering and faking it, or it’s psychosomatic. All these women can feel the pain when they sit, lie down, or walk, but then all these male doctors tell them that they’re wrong. There’s a lot of gender bias when it’s a condition that mostly affects women,” Kayla said.

Accusations of gender bias in healthcare and chronic pain treatment are not a new. That is particularly the case when it comes to rare diseases such as Tarlov cyst.

Dr. Nader Ghasemlou, a neuroscientist who leads the Pain Chronobiology and Neuroimmunology Lab at Queen’s University, said the unusual nature of the disease helps explain why medical professionals often overlook it.

“The incidence of Tarlov cysts is around five to 10 per cent of the population, let’s say 7.5 per cent. Then, only one per cent of those people experience pain or complications associated with the cysts. So, at most, 0.1 per cent of the population is dealing with this. That’s actually a significant number of people when you think about it. However, I’m guessing, if you’re a radiologist, and you’re looking at spine scans every day, and you see these cysts happening all the time, and it’s not something that the person was there for, you say, ‘These are normal. This happens all the time, and so it’s uneventful.’”

Historically, Ghamselou said, experimental work in medicine was almost exclusively done on male animals. The reasoning was that male mice don’t have menstrual cycles, so their biology was considered less variable and easier to study over long periods. However, groundbreaking work by Jeffrey Mogil at McGill University in Montreal and Michael Salter at the University of Toronto has changed this perspective. They showed that the menstrual cycle doesn’t affect experimental consistency. More importantly, the two researchers demonstrated that the mechanisms of pain differ fundamentally between male and female mice — and likely between men and women. This discovery has opened up a new field of research examining why women experience more pain than men.

There’s also an enduring misconception that chronic pain is purely psychological. The International Association for the Study of Pain defines pain as physical, psychological, and social in nature. While emotional responses can contribute to pain, this doesn’t mean the pain isn’t real. Especially with conditions like Tarlov cyst disease, where scans clearly show a physical cause, dismissing patients’ pain as imaginary reflects a lack of education rather than valid reasoning. This approach is not only wrong but deeply harmful, Ghasemlou said.

Dr. Millan Patel, a clinical professor in medical genetics at the University of British Columbia and the co-founder of the Rare Disease Foundation said that an inherent sexism or chauvinism in the system has tended to lead healthcare professionals to discount women’s complaints. For example, he said, research shows women with heart disease die from heart attacks much more often than men because their symptoms aren’t taken seriously. Women are 50 per cent more likely to be misdiagnosed with a heart attack even though they carry the same risk of developing heart disease as men.

Another problem, Patel said, is that when a doctor accustomed to diagnosing known conditions is confronted with something unfamiliar or poorly understood, he may be inclined to dismiss the issue altogether.

“If it’s not obvious, they just say, ‘Nah, it’s all in your head,’ because the alternative would be to fully accept what the patient says and then do a whole pile of work in an area you don’t understand well. And so the easy button is just to discount it,” said Patel. “I wonder if there’s a certain intellectual laziness in some physicians.”

Dr. Kieran Murphy, a neuroradiologist at Toronto Western Hospital, has been treating Tarlov cyst patients for the past 20 years. He says about 20 to 30 per cent of them are symptomatic. In a recently published research paper, he concludes that inadequate knowledge due to the rarity of the cysts or gender bias by physicians has resulted in patients going untreated or facing significant delays in treatment.

It typically takes 10 to 15 years to change medical practices, Murphy said, especially for diseases once considered incidental or asymptomatic. “It’s just a matter of educating physicians, most of whom stop learning new things once they leave medical school. Physicians need to be re-educated.”

Dr. Frank Feigenbaum, a Dallas-based neurosurgeon who specializes in treating patients with Tarlov cysts, says that it’s only more recently that the fact that Tarlov cysts can cause symptoms has started to become more mainstream thinking. The Centers for Disease Control and Prevention in the United States and the Centers for Medicare and Medicaid Services, he said, have designated Tarlov cysts as a potential pathology that causes symptoms in the spine and have given it a specific code.

“These are relatively new developments, so as time goes on, more and more people will become aware that Tarlov cysts can cause symptoms and what those symptoms might be. But it takes time for people to learn—or unlearn—what they’ve heard in the past. Specifically, in previous decades, the dogma was that Tarlov cysts never cause symptoms or are always asymptomatic. However, ‘never’ and ‘always’ in medicine usually turn out to be incorrect,” he said.

The saying “What doesn’t kill us makes us stronger” does not apply to Tarlov cyst patients, at least not in a medical sense. People who have multiple symptomatic Tarlov cysts are likely to experience ongoing nerve damage, leading to permanent chronic pain and disability.

Doctors generally prescribe antidepressants and anti-seizure medications for Tarlov cyst disease. These medications affect the neurotransmitters in the brain, which helps dial down the nerve pain. According to Ghasemlou, gabapentin and pregabalin are the frontline medications for chronic pain. “This is the standard treatment for everyone,” he said. “If it doesn’t work after six to twelve months, then other options are to try to reduce the pain.”

Kayla says she’s on amitriptyline and gabapentin. “Amitriptyline has gradually stopped working as effectively for me, so I am experiencing more pain in my legs,” she said. “I switched from taking pregabalin, which never worked, to gabapentin. However, within a few weeks of taking it, a significant amount of my hair has started to fall out.”

The constant pain and fear of becoming permanently paraplegic, coupled with a lack of support and dismissal from medical professionals in Canada, leaves some Tarlov cyst patients feeling that they have no choice but to seek medical help outside the country, which comes with a hefty price tag.

The cost of Tarlov cyst surgery performed by Feigenbaum, who treats patients from around the world in Dallas and at a hospital in the Mediterranean island nation of Cyprus, hovers around $80,000, depending on the number and size of the cysts.

The high cost of private, out-of-country surgery means that patients often must spend their life savings or raise money through a bank loan, remortgaging their houses, or asking family members for money. Both Tara and Vera set up a fund-raising campaigns.

Murphy said that inadequate or dismissive treatment of Tarlov cyst patients can leave them desperate, or even suicidal.

“In Canada, doctors can get away with treating patients very badly because they have so many patients,” he said. “Unfortunately, our patients suffer.”

But Murphy also expressed strong opposition to out-of-country surgeries. “I don’t believe in the medical tourism that’s going on. There are too many operations being performed. Our doctors in America often treat this as a cash cow, performing surgeries on everyone, sometimes causing harm to patients. This is a serious issue because commercially-oriented American physicians can exploit patients, leaving them in worse conditions. I’ve seen many patients return from U.S. surgeries devastated, suffering from bowel and bladder issues; some are even in diapers. Worse still, some patients travel to places like Cyprus for surgery, and no one knows what’s happening in places like that.”

He encouraged Tarlov cyst sufferers not to assume that going to the U.S. is a solution. “Many of those patients are coming back no better but financially poorer – significantly poorer,” he noted.

“Personally, I am not aware of a case in Canada where a patient who had surgery [with me] ended up paralyzed,” said Feigenbaum.

It is possible to experience some weakness or numbness that wasn’t present before surgery, but the goal of the procedure is to relieve pressure on the nerves and give the body a chance to heal them. That’s the intent, he added.

Patients with symptomatic Tarlov cysts have nerves that have been compressed and injured. It’s similar to any spinal pathology that puts pressure on nerves and causes damage, said Feigenbaum.

“As surgeons, we can go in and relieve that pressure—for example, by treating Tarlov cysts that are pressing on the sacral nerves—but we cannot heal the nerves themselves. We simply don’t have that technology. Only the patient’s body can heal the nerves, and so far, nobody has figured out how to heal somebody’s nerves for them.”

Because of this, Feigenbaum added, the recovery process after surgery is often a mixed picture. Some symptoms improve right away, while others take weeks or months. Depending on the extent of nerve damage, some may not improve at all. In cases where the nerves are severely injured, the body may not be able to heal them fully. Additionally, some symptoms can temporarily worsen due to nerve irritation from the surgery itself.

“From my data, 70 to 80 per cent of patients experience significant improvement in sacral, buttock, and leg symptoms, including an increased ability to sit for longer periods. The percentage of patients who report worsened symptoms is usually in the low single digits,” he said.

Feigenbaum notes that the decision to undergo surgery is a difficult one for patients. If their nerves are being continuously compressed, and they’ve exhausted other treatment options with no relief, they’re left with a choice: continue deteriorating or take the risk that surgery could place them in the category of 70–80 per cent who improve, rather than the small percentage who experience worsening symptoms. It’s a deeply personal decision, and those who haven’t been in that position may struggle to fully understand what it’s like to weigh those risks while watching their quality of life decline.

“In tracking several hundred patients for two years post-surgery, we found that 70 to 80 per cent experienced significant improvement in sacral, buttock, and leg symptoms, 60 to 70 per cent saw improvement in symptoms in the private areas, and 50 to 60 per cent had better bladder and bowel function. These are the statistics I share with patients so they can make an informed decision, weighing both the risks and the potential benefits,” said Feigenbaum.

Tara, who travelled to Cyprus for surgery by Feigenbaum in October, said two other Canadians were also in the Cypriot hospital with her. “They came to get surgery because they were also not receiving care back home,” she said.

Vera was treated by Feigenbaum in 2023. “Everything about the experience was positive for me,” she said. “It was very well-organized, and they took great care of me.” She added, however, that there is a misconception about Tarlov cyst surgery, as many people assume recovery is immediate.

“Just because I’ve had surgery doesn’t mean I’m 100 per cent better right away. It’s not like getting tonsils or an inflamed appendix out,” she said. “Nerves take time to heal, if they heal at all. Some people have been fortunate to get surgery soon after symptom onset. However, I was not able to get surgery as quickly as others. I have had this disease a lot longer than some people before getting surgery. My nerves have been compressed by very large cysts for a very long time.”

Kayla spoke to Feigenbaum, but has so far decided not to travel to Cyprus for surgery. In part this is because she now has permanent nerve damage. “I know if I had the surgery, I wouldn’t go back to the normal self that I was before this happened.” But she also worries about complications. “I personally don’t want to travel across the world to a tiny island to have spine surgery like that,” she said. “What if something were to happen? You’re halfway across the world, and you’ve spent all this money. It’s just scary.”

Tara’s GoFundMe page was updated on December 30, 2024, with a message to those who contributed to her campaign and a new photo of her smiling brightly while holding her dog.

“It’s hard to believe that it has already been two months since my surgery, and I’m amazed at how well I’m doing! For the first time in almost 2 years, I can say that I have hardly any pain. I’m finally returning to being active and living my life again, a reality that didn’t seem possible just a few months ago. Every day feels like a gift, and I’m so grateful for this incredible turnaround.”

References:

Clarke, G., Kapoor, V., & Baxter, J. (2016). Are Tarlov cysts being identified and reported on lumbar spine MRI scan in patients with sciatica? Journal of Radiology Case Reports, 40(5), 276–280. https://doi.org/10.1055/s-0036-1582706

Electromyography and a review of the literature provide insights into the role of sacral perineural cysts in unexplained chronic pelvic, perineal and leg pain syndromes. (2017). ResearchGate. https://www.researchgate.net/publication/317684608_Electromyography_and_A_Review_of…

Feigenbaum, F. (n.d.). Tarlov cysts truths with my surgeon, Dr. Frank Feigenbaum [Video]. YouTube. https://www.youtube.com/watch?v=Uq4OrVa6deM

Medical care experiences of 85 Tarlov cyst patients. (n.d.). [Video]. YouTube. https://www.youtube.com/watch?v=WuDW5x2PyuI

National Organization for Rare Disorders. (n.d.). Tarlov cysts. https://rarediseases.org/rare-diseases/tarlov-cysts/

Neglected Tarlov cysts: A case of a Tarlov cyst with spermatorrhea. (2021). ResearchGate. https://www.researchgate.net/publication/351432174_Neglected_Tarlov_cysts_a_case_of_a_Tarlov_cyst_with_spermatorrhea

Symptomatic Tarlov cysts are often overlooked: Ten reasons why—A narrative review. (2019). ResearchGate. https://www.researchgate.net/publication/333025384_Symptomatic_Tarlov_cysts_are_often_overlooked_ten_reasons_why-a_narrative_review

Symptomatic Tarlov cysts: An overlooked and dismissed spine condition. (n.d.). [Video]. YouTube. https://youtu.be/1_bkZhCtOI4

The post A Disease to Be Believed: Canadian Tarlov cyst patients demand acknowledgment of their pain by healthcare professionals appeared first on Canada's Health Magazine.

Let’s explore the bold advances that are giving Canada’s children better chances, brighter futures, and stronger voices in the battle against cancer.

Genomics Takes the Lead: One Size Doesn’t Fit All

At BC Children’s Hospital, an innovative approach called Pediatric Personalized OncoGenomics (PedsPOG) is changing the game. This isn’t just a medical test—it’s a genomic roadmap tailored to each child’s unique cancer. By analyzing a tumor’s DNA and RNA, researchers have been able to uncover targeted treatment options in nearly 96% of cases, with 15% revealing hereditary red flags that could protect entire families.

What this means: no more generic chemo plans. It’s precision medicine, crafted for the tiniest, most vulnerable patients—with massive impact.

From Chicken Eggs to Breakthrough Drugs

You’d never expect it, but chicken eggs are now helping doctors fight childhood cancer.

Researchers at UBC’s BRAvE lab have introduced a revolutionary new model—growing human tumors on the membrane of fertilized eggs. The goal? To rapidly test which drugs (even unexpected ones like antidepressants) stop the cancer in its tracks. It’s fast, cost-effective, and surprisingly accurate—sometimes delivering answers in just two weeks.

Could this quirky lab method transform pediatric cancer trials? The early signs say yes.

Clinical Trials, Now More Accessible Than Ever

Canada is also stepping up its game with nationwide trial access, removing the postcode lottery from life-saving research.

Through platforms like ACCESS and U-Link, parents can now explore treatment options and clinical trials near them—whether they’re in downtown Toronto or remote Nunavut. There’s even financial assistance to help cover travel, lodging, and missed work.

This is more than medical support—it’s family empowerment in action.

Support Beyond the Hospital Walls

According to the 2025 Impact Report from Childhood Cancer Canada, medical care is just one part of the healing journey.

Perhaps most touching is the DECRYPT initiative, Canada’s only national project targeting rare and aggressive pediatric brain cancers. When traditional treatment falls short, DECRYPT steps in—with compassion, courage, and cutting-edge science.

Discoveries That Could Stop Cancer from Spreading

In Vancouver, a new drug in development may block the spread of osteosarcoma, a bone cancer that affects children and teens. The discovery—led by renowned pathologist Dr. Poul Sorensen—targets a protein called IRS2, potentially stopping tumors before they reach the lungs. Clinical trials are on the horizon, and the research has already sparked international interest.

Real Stories, Real Impact

“Every discovery adds a piece to the puzzle. We’re not just treating cancer. We’re building a future where more children can thrive.”
—Dr. Georgina Barnabas, BC Children’s Hospital Researcher

“This brings new hope to children battling osteosarcoma. We might be able to give them a much better chance.”
—Dr. Poul Sorensen, BC Cancer Researcher

The Bottom Line

Canada’s pediatric cancer landscape is evolving—from data-driven therapies and national trial networks to innovative lab testing and heartfelt support programs. It’s no longer just about surviving cancer—it’s about living well through it and beyond.

As science advances and communities rally, the message is loud and clear: Childhood cancer won’t win this fight—not without meeting fierce resistance and fierce love.

Sources & Further Reading

1. BC Cancer Research Centre: A Decade of Work Advances Care for Children with Cancer

2. BC Children’s Hospital Research Institute: Personalized Childhood Cancer Care

3. Childhood Cancer Canada (2025). Impact Report 2025 (PDF)

4. University of British Columbia: Could Chicken Eggs Help Revolutionize Cancer Treatment for Children?

5. Government of Canada: Clinical Trials for Pediatric Cancer

6. BC Cancer Foundation: New Drug Discovery Could Prevent Spread of Childhood Bone Cancer

The post Early Battles: The Promising Advances in Childhood Cancer Care Across Canada appeared first on Canada's Health Magazine.

Magazica: Welcome to today’s episode of Magazica. We are thrilled to have a truly remarkable guest with us, Ardra Shephard.

Ardra is a writer, consultant, podcaster, and speaker, whose award-winning blog “Tripping on Air” has earned international acclaim. With a powerful voice in the chronic illness community, she has been featured in major outlets like In Style, and WebMD.

Ardra is also the creator and host of AMI-TV’s “Fashion Dis,” a groundbreaking lifestyle series that celebrates fashion and makeover transformations for people with disabilities. But her work doesn’t stop there. She is also a regular columnist for Magazine and is preparing to release her memoir (Douglas & McIntyre) “Fallosophy: My Trip Through Life with MS” in March 2025. Very exciting times for Ardra.

Hi, Ardra, welcome to Magazica.

Ardra Shephard: Thank you so much for having me. I am excited to be here.

Magazica: Let’s start with your early years. In your blog and various articles, you’ve mentioned that you were first diagnosed with MS at the age of 23. How did that diagnosis change your perspective on life at such a young age?

Ardra Shephard: Everything changed. It was a defining “before and after” moment for me. At 23, you think everything is possible and you don’t know how your life will unfold. That diagnosis changed everything in ways I anticipated and in ways I didn’t. It was a traumatic time.

Magazica: What was your initial reaction upon learning about your condition? Were there any misconceptions or fears that stand out in hindsight?

Ardra Shephard: I didn’t know anything about MS, so it seemed like the worst possible thing that could happen. My presenting symptom was vision loss; I kind of went blind overnight and also had difficulty walking. Despite such serious symptoms, I didn’t think something was seriously wrong—I thought I might need some antibiotics. I was shocked by such a serious diagnosis. It affected me at that time in my life. But over the 20-plus years since that diagnosis, I’ve learned so much. A difficult life doesn’t have to be a joyless life. That was a surprise after getting an MS diagnosis at a young age.

Magazica: I truly understand. When my son was first diagnosed with ASD, we had no idea what we were dealing with. We thought our best days were behind us. Can you share how the societal stigma impacted your personal and professional life in the early years of your MS journey?

Ardra Shephard: Stigma was something I was unprepared for. I naively didn’t expect people would treat me differently, but I learned quickly that they did. It was another shock and insult to an already difficult situation. I had a lot of support from coworkers, family, and friends, but I also had experiences filled with stigma and misconceptions. Being left out or passed over made me more closed off and protective of personal information. Now, more than 20 years later, I have a very public presence as someone living openly with MS. It’s been a long journey to claim my narrative and tell my own story. There were years when I was secretive about my condition because it had cost me some things. I realize now that the only way to crush that stigma is to be open about it.

Magazica: In your blog and writings, you’ve mentioned being secretive about medications and the processes you’re going through. How did you eventually find the confidence to embrace your condition publicly and start your popular blog “Tripping on Air”? What sparked that change?

Ardra Shephard: I think it was. You know, we haven’t talked about what multiple sclerosis is. It’s very common in Canada and is the most disabling disease of young people. Typically, people are diagnosed between the ages of 20 and 40, although it can happen earlier or later. It’s a neurological condition, and I like to say that what can go wrong might go wrong. It can affect vision, mobility, sensory perception, pain, and cognition it looks different in everyone, with no two cases being the same. However, many symptoms overlap, fatigue being a common one. It’s also known as an invisible illness or a non-apparent illness. For a long time, I was passing as non-disabled because I could hide my symptoms. But about 10 years ago, my symptoms became more apparent—my foot would drag, people would ask what was wrong with my leg, and eventually, I needed a cane and now use a walker.

Ardra Shephard: The blog started when my illness was becoming less invisible, and I was getting asked questions that I didn’t like. It wasn’t just from people I knew but also strangers. Every time I got out of an Uber, people would ask, “What happened to you?” or “What’s wrong with you?” Being asked what’s wrong with you by someone who doesn’t know you is incredibly demoralizing. To think that someone’s first impression of you is that something’s wrong is tough. Starting the blog was a way of asserting how I saw myself—not as damaged goods, but as someone living with a condition that I adapt and adjust to. I needed to assert my own narrative and show that I have a great life.

Magazica: Yeah, I was reading one of your interviews where you mentioned being denied the restroom at a Tim Hortons.

Ardra Shephard: Yes, that happened.

Magazica: So you started “Tripping on Air” to share your journey. That must have taken a lot of courage.

Ardra Shephard: Thank you. One of my first posts in 2015 was titled “Honey, I Peed the Bed,” where I talked about my experience with bladder incontinence—a very personal and taboo subject. I wanted to write what I needed to read when I was diagnosed with MS. I aimed to create honest content that wasn’t already out there, to help others and myself feel less lonely. Knowing that someone else is going through the same thing is profoundly comforting.

Magazica: Yeah, for sure. One of the lines that popped into my mind while listening to you is that self-respect isn’t always about respecting yourself; sometimes it’s also about understanding your worth along with all your limitations.

Ardra Shephard: Yeah, I think the way we look at illness culturally in North America is as something to overcome. We don’t talk enough about adapting to it. We often see adapting and accepting as failure and use warrior language to describe fighting our illness. But who am I fighting—myself? I don’t want to be in conflict.

Magazica: Probably not.

Ardra Shephard: Right. One of the bravest and strongest things we can do is adapt and figure out how to live with our condition. It’s practical. Otherwise, this fighter mentality can set us up for resisting tools like mobility aids, which can lead to falls and injuries. Culturally, we’ve assigned value to resistance, but it’s not healthy. It hasn’t been healthy for me.

Magazica: It’s not always about having a fight or flight response.

Ardra Shephard: Exactly. I think not fighting doesn’t mean you don’t do things you can control to have the best possible outcome. I can do my physio, take my medication, and set myself up for success without framing it as a battle.

Magazica: Understandable, easily understandable. Now, let’s talk about your upcoming memoir, It’s a blend of your personal stories and reflections. What inspired you to write it, and what do you hope readers will take away from it?

Ardra Shephard: I’m so excited about this book. “Fallosophy” is very much in the style of my blog. The blog starts about 10 years ago, while the book begins with my diagnosis, filling in a lot of blanks. It’s funny and relatable, even if you don’t have MS. We all go through stuff, and it’s about adapting and coping.

Magazica: It’s such an evocative play on words. Can you explain the deeper meaning of Fallosophy?

Ardra Shephard: Sure. It relates to “Tripping on Air,” which describes my life with MS and my gait issues that make me fall sometimes for no reason. “Fallosophy” is a collection of my worldview and philosophies, informed by literal and figurative falls.

Magazica: I’m a big fan of stoic philosophy—Marcus Aurelius, Seneca. “Meditations” is almost always on my bedside table. When I first heard your book’s name, I thought, “Wow, what a beautiful name.”

Ardra Shephard: Thank you!

Magazica: Let’s dive into some core essences of your blog and your upcoming book, “Fallosophy.” Let’s talk about overcoming challenges.

Magazica: How do you self-catheterize, and how did you build that resilience? What is your mechanism?

Ardra Shephard: I don’t think of myself as overcoming anything; it’s about adapting and adjusting. Many people in the MS community and even the medical community might think that having to self-catheterize to empty my bladder sounds horrifying and terrible, and that’s certainly what I thought before it was introduced to me. But I learned quickly that it was a solution to a massive problem. It doesn’t hurt and doesn’t need to be stigmatized. It’s a tool that helps me get on with my life. It was freeing. This is similar to the language we use around wheelchair use—people say “confined to a wheelchair” when, in reality, a wheelchair is a tool that helps you get around, just like eyeglasses help you see. You’re not confined to seeing things through lenses if that makes sense.

Magazica: Makes sense. Personally, what do you do in your day-to-day life? Is there a role for journaling or maintaining a diary in shaping this book?

Ardra Shephard: Yes, I’ve always kept a diary, and you can see a lot of them behind me. Keeping a diary has been therapeutic for me. It helps me understand myself and my life, remember things, and relive good experiences like traveling. Journaling has been key to knowing myself, and I’m thankful to my younger self for doing it. The book Fallosophy spans 20 years and hearing my 23-year-old voice helps me write authentically. It’s amazing how our memories warp and change. Seeing my younger self in my diary helped me write in that voice.

Magazica: And you can also see your evolution over the years.

Ardra Shephard: Absolutely. Getting through tough times and reminding yourself that you did it gives you the courage to face the next challenge. All those experiences accumulate, and you start to see the pattern—if I survived this, I can survive what’s coming next.

Magazica: What’s coming next? Absolutely. Now, how much do you think the support system—social or specifically family—plays a role in overcoming challenges? You’ve talked about your mother before. How does her support and the words of your family impact you?

Ardra Shephard: I almost feel like this book is a love letter to everyone in my life who has supported me—my parents, my husband, my best friends, even my dog. MS can be a very lonely disease, and as important as any pharmaceutical therapy or medication is, cultivating relationships is crucial. Having a support system—a team—is everything. This includes other people with MS and my family, friends, and dogs. It’s critical to getting through life in general.

Magazica: Readers already know you have a busy life, both personally and professionally. How do you balance the two?

Ardra Shephard: I don’t, you know. I think, who does? Many days, I don’t feel that busy. I have to sleep and rest when I need to. Externally, it can seem like I have a busy public life, but it’s hard to see how much downtime I need in a day. I have to be protective of that time. Most people with MS don’t have as many available hours in the day. We make the most of the time we have, but it’s important to give myself grace when I need a day to stay in my pajamas and read a book.

Magazica: The reason I’m asking is that we sometimes work with corporate clients who say they don’t have any time. As someone with an HR background, I tell them they need productive time as well as downtime for themselves.

Ardra Shephard: A hundred percent. We make time for what’s important to us. It can be hard for people who work too much and don’t spend enough time with friends, family, or hobbies. I liked Martin Short’s memoir because he broke his life into categories and scored himself. If work isn’t going great, can I be better at friendship or exercise? When I have a lot of work, other things suffer, like not doing enough physio or eating well. I have to recognize those choices because my work feels valuable to me, and I’m lucky to have work I love.

Magazica: Oh, yeah.

Ardra Shephard: There’s often a cost. There’s not enough energy in an MS body—or any human body—to get everything done. We have to make choices, and those choices can be different every day.

Magazica: One thing a business professor used to say in our entrepreneurship class at U of T, “How do you build a successful business?” We expected answers like having a revolutionary product or new technology, but he said, “You will make money when you solve people’s problems.”

Ardra Shephard: Interesting, because culturally, we measure success based on money. We don’t think enough about being successful by helping others. A successful life isn’t just about what we gain but also what we give back.

Magazica: And that’s what you’re doing through your blog, your book, your speeches, and “Fashion Dis.”

Ardra Shephard: Thank you. I feel a little awkward accepting that compliment because this work is so healing for me. It doesn’t feel like giving back as much as it feels like it’s helping me figure things out and come to terms with it.

Magazica: But your courage and resilience are inspiring for so many people and families.

Ardra Shephard: Thank you. That’s kind of you.

Magazica: It’s true. You’ve been journaling, speaking, and working with communities for almost 15 to 18 years now. What changes have you noticed in people’s understanding of chronic illness, specifically MS, over the past 20 years?

Ardra Shephard: The most change I’ve noticed has been in the last five years. Social media has changed who tells stories and who the gatekeepers are. I’ve noticed a difference in communication between doctors and pharmaceutical companies, with more involvement of patients in their care.

When I started posting pictures of myself with mobility aids on social media, I was hashtagging them “babes with mobility aids” because I was looking for role models. Now, it’s all over social media, normalizing the experience. Social media often gets a bad rap, but it has been positive in giving voice to and normalizing these experiences.

Magazica: I read somewhere that you work with pharmaceutical companies as an advisor. Is that correct?

Ardra Shephard: Yes, I’ve consulted with several pharmaceutical companies on patient advisory boards. It feels great to have a voice in these rooms. These powerful organizations can make immediate improvements in the lives of people with MS and other chronic illnesses. It’s about inclusion, getting rid of stigma, and effective messaging.

Magazica: That’s great to know. I checked the statistics before this interview, and Canada has the highest per capita incidence of MS. How does that shape awareness and resources for people with MS?

Ardra Shephard: I’m fortunate to be a member of the BARLO MS Centre at St. Michael’s Hospital in Toronto, which has almost 11,000 patients. It’s a world-leading facility with a top-notch team of research scientists on the cutting edge of MS research. The work they’re doing will impact the MS community globally. Toronto’s diverse population provides valuable research data, which is a strength of the center.

Magazica: That’s enlightening. I had no idea such a significant institution was in Toronto. We’d be honored to highlight their work for the community. We bring attention to the services provided by the Canadian medical community for citizens, especially those working silently.

Ardra Shephard: I’ll give you some names after the interview. I’m sure they would be delighted to come on and share their work.

Magazica: We would be honored. And now, after 20 years of writing, your memoirs, and everything, if anyone asked you, in your silent moments, deep down in the core of your resilience, what are the life lessons you want to give to others?

Ardra Shephard: I think it’s joy. A difficult life doesn’t have to be a joyless life. Seek out joyful experiences and don’t deny them to yourself. We have to make a better world for ourselves, each other, and our children. It’s hard to sum up into a lesson, but I think joy is really important and available to all of us. Give people the benefit of the doubt because everyone is going through something, whether you know what it is or not.

Magazica: Let’s talk briefly about the future activities you’re planning. How do you see the future of “Tripping on Air”?

Ardra Shephard: Oh, gosh! On the heels of writing a book, it’s like, “What do I write next?” I don’t know. There’s room to see stories of disabled bodies evolve in television and movies. We’re heading in that direction, and I’d love to be part of more authentic storytelling where people with disabilities are in the room and part of the conversations. For this year, I’m focused on talking about the book and meeting people. When I started the blog “Tripping on Air,” I didn’t know how it would resonate. I focused on telling the truth and making something that feels quality, good, and real. The opportunities will come, and that’s how I feel now.

Magazica: And I’m sure all of these will inspire people a lot. So, after “Fallosophy” what’s next?

Ardra Shephard: I don’t know. I think that’s exciting and a little bit scary. I’m not rushing to find out what that is. One thing I’ve learned from having MS is that there have been times when I didn’t think I had a next chapter, and then I was surprised to discover that I did. So, we’ll see what happens next. I don’t know.

Magazica: Give yourself some time, and after dealing with the publication, talk about the book to larger audiences as we are now. You’re talking to the readers of Magazica, so let’s talk about it and the experiences you have. I’m sure there will be many, many books ahead.

Ardra Shephard: Oh, gosh, thank you. I think that’s probably the angst of any writer, right? What’s next?

Magazica: That is the blog, that is the book. As a person, what’s next for Ardra Shephard? What exciting plans or projects do you see on the horizon?

Ardra Shephard: I love to travel, so I’m excited to travel and talk about the book. One of my favorite roles in life is as an aunt. I have nieces and nephews aged 6 to 21, and spending time with them during these precious years is a goal of mine.

Magazica: They are lucky to have you as a role model.

Ardra Shephard: Thank you. It’s cool to see these kids grow up with me in their life as someone who’s disabled. They’re not weird about it. It’s cool to feel that and be an example for them. I’m encouraged by the next generation growing up with fewer ableist ideas.

Magazica: Children are more accepting, no?

Ardra Shephard: Yeah, I think so. Then we mess them up with all our stories.

Magazica: True. They come into this world with such pristine, good hearts, and we adulterate them.

Ardra Shephard: One of my favorite stories about my nephew: I think he was about 10, and I could hear him in the next room talking to my husband. He said, “Uncle Kari, what’s it like to be married to someone…?” And I thought, here we go. But what he said was, “What’s it like to be married to someone who’s famous?” I was just amazed. I thought he was going to say “disabled,” but he didn’t. It was about the admiration of his aunt. That’s what he saw—that I’m doing cool stuff.

Magazica: The focus was on your accomplishments and activities, not on your disability.

Ardra Shephard: Yes, on the cool stuff. Not my weird walk. In their generation, it’s all about the cool stuff.

Magazica: Now they’ll see that you’re on YouTube, on some magazine’s channel.

Ardra Shephard: That’s right.

Magazica: Thank you very much. I know it’s a busy time for you. Thank you for sharing your beautiful thoughts. I’m enriched, and I think our readers will be too. Thank you very much.

Ardra Shephard: You’re very generous. Thank you so much. It was a real pleasure to chat with you.

Magazica: Thank you for your inspiring presence.

The post From Diagnosis to Empowerment and Resilience: Ardra Shephard’s Inspiring Journey of Living with Multiple Sclerosis, Challenging Stigma, and Finding Joy appeared first on Canada's Health Magazine.

For the first few years of my life, I was the centre of my mother’s universe. At just 14-years old, she poured all of herself into raising me, determined to give me the best life she could despite overwhelming odds. I wasn’t her first baby—when she was only 13, she gave birth to her first child, who was placed for adoption. The pain of that loss left a deep scar, and she vowed not to repeat it with me. She ran away from home and became the first young woman to enter “The Rehoboth Home – House for Unwed Mothers,” a refuge for pregnant teens in 1987. The company tag line was “an alternative to abortion.” It was there in that not-for-profit, that she clung to hope and to me, choosing me and to fight for a life for us both.

Years later, I gained access to my mother’s diaries and learned more about how I came to be. She wrote that I was conceived in a backyard garden shed—a detail that, while unconventional, revealed her desperation for agency and love in a world that gave her so little control. That shed became a defining metaphor for my life: an unlikely beginning in an unlikely place, but one that was filled with a fierce determination to survive.

Although my mother never finished Grade 9, when she was in school, she found ways to make me part of that world. She brought me to her parenting class as a real-life baby for her classmates to learn from. Technically you could say before I could even walk, I was helping teach people what it meant to care for a child. Those early years with her, though marked by struggle, were filled with love and determination. She gave me everything she could with the resources she had available to her.

When my mom was 18, she gave birth to my younger brother. It’s no doubt that she experienced postpartum depression, compounded by the drugs she was using and the people she had gotten involved with. Her struggles grew heavier, and by the time I was four, the weight of her mental health challenges, substance use, and the chaos of her relationships became undeniable. My brother and I were swept into the turbulence, caught in a system that didn’t always know how to help us or her.

In the 1990s, courts overwhelmingly favored mothers in custody disputes, often overlooking the complexities of their situations. My brother and I were repeatedly taken away by Children’s Aid Society (CAS) workers and placed into the custody of family members or adult relatives, only to be returned to her when the courts deemed her fit again. Each time we were taken, I hoped things would get better when we returned, but the cycles of chaos and instability always repeated.

During these turbulent years, my mother was frequently admitted to psychiatric institutions. I vividly remember visiting her at the psychiatric hospital in St. Thomas, Ontario. The stark hallways, the heavy air, and the supervised visits are etched into my young mind. During one visit, she gave me a multi-coloured (extremely ugly) blanket she had crocheted as an inpatient. It was a gift that symbolized her love for me, even during her severe struggles—a love she could express in the ways she still had control over.

By the time I was 10, the court system made a final decision. My brother’s biological father—who had been in my life since I was nine months old—was awarded full custody of him. But he didn’t stop there. Knowing that placing me in the foster care system would likely separate us forever, he chose to adopt me as well, alongside his wife. Though we didn’t share biology, he made the conscious decision to accept me as his own, giving me a home and a family when I needed it most. His choice to take me in was a profound act of love and protection, ensuring that I wouldn’t be lost to the system.

From the moment I was adopted, work became a defining part of my identity. At 11 years old, I started my first paper route. I babysat, cut grass for neighbors, and looked for any opportunity to contribute. By the time I was 13, I began volunteering at a long-term care (LTC) home, folding laundry and helping in small ways. That experience opened a door for me, and at 14, I was hired as a “laundry student,” officially starting my career in healthcare.

I worked in that same LTC home for the next eight years, learning the value of hard work, empathy, and community. It was in this LTC home where I met “Olive” – a 93-year-old who seemingly made a remarkable impact on my life, and she wouldn’t even know it. She was the first person I ever experienced death with.

When I turned 22, I made the decision to move to Toronto, eager to expand my opportunities. There, I continued my work in long-term care, and by running an Alzheimer’s Day Program every Saturday for the next eight years. It was rewarding and humbling work, teaching me patience and the importance of dignity in every stage of life. These years solidified my passion for working with people, particularly those in vulnerable circumstances, and helped shape the career I would go on to build.

In 2012, I transitioned into the hospital system, starting a new chapter in my professional journey. Over the years, I’ve worked in various capacities, from patient flow & complex patient case management to clinical operations and leadership roles. My 27-year career has been defined by a commitment to service, compassion, and continuous growth. What began as a paper route and babysitting gig turned into a lifelong mission to make a difference in people’s lives.

Alongside my career, I’ve channeled my energy into giving back to the community. In 2023, I founded Olive Branch Mentorship Inc., and we were incorporated as a non-profit in April of 2024. OBM Inc. is dedicated to supporting young professionals and fostering intergenerational connections. Through mentorship programs, leadership initiatives, and community projects, I’m working to create opportunities for others who feel unseen or undervalued, just as I once did. The not-for-profit has been thriving, and we’re now looking to expand with The Olive You Podcast, a project that shares inspiring stories, professional development advice, and mentorship opportunities to reach even more people.

In January of this year, I’ve also started a new business: The Human Experience Co. This venture focuses on a series of small, positive projects designed to “improve the human experience.” My goal is to integrate these initiatives into businesses and public places, spreading positivity during the moments and experiences when people need it most. Whether it’s a dopamine dispenser filled with motivational messages, simple acts of kindness in unexpected places, or creating thoughtful tools for workplaces, I want to help people reconnect with the beauty of life, even in its hardest moments.

Resilience, for me, isn’t about pretending the pain didn’t happen or moving on quickly. It’s about acknowledging it and using it as fuel to create something better. My journey has been anything but linear—it’s been filled with loss, heartbreak, and challenges that I often struggle to put to words. But it’s also been filled with love, growth, and the belief that I could turn my struggles into strength.

Losing both of my adoptive parents has been one of the hardest things for me to overcome. I thought I would have them forever, given how young they were when they adopted me. My adoptive father, who chose me and gave me a home, passed away after a 4.5-year battle with Lou Gehrig’s disease – ALS. My adoptive mother followed years later after a 7-year fight with cancer that spread from her colon to her lungs and brain. My mother’s passing laid bare the fractures in my relationship with my adoptive siblings, who claimed I was never “officially” adopted (untrue) and excluded me from the family estate – changing my mother’s will 2-months before she died. They have chosen to live off the life insurance left behind, clinging to what their parents built while never creating anything meaningful for themselves. I could let this betrayal define me, but I refuse to let it.

Instead, I’ve put every ounce of my energy into building a life of purpose. My work with Olive Branch Mentorship Inc., The Olive You Podcast, and The Human Experience Co. are all reflections of my commitment to creating something meaningful out of the broken pieces of my past. Through mentorship, storytelling, and small acts of kindness, I’m working to make the world a little brighter for those who need it most.

Today, I am proud of the life I’ve built. I don’t have contact with my biological mother, out of choice and to protect my peace (read: sanity). My story isn’t just about survival—it’s about transformation. It’s about finding light in the cracks and proving that no matter where you start, you can rise, thrive, and inspire others along the way.

The post Turning Trauma and Chaos into Purpose: A Journey of Transformation – Shannon Knelsen appeared first on Canada's Health Magazine.

When we landed in Canada in August 2024, my heart swelled with hope for the new life we were about to build. We left everything behind in the Philippines, chasing dreams of a brighter future for our family. But by September, that hope was shaken to its core. My son, Kent, was diagnosed with a malignant bone tumor in his leg. It was a moment that flipped our world upside down, thrusting us into a battle we never anticipated. As a father, all I could think of was how to keep my family strong in a country that was still so unfamiliar to us.

More than a month ago, I always stayed by my son’s (Kent) side since he can no longer walk and is in constant agony, which caused me many sleepless nights and made it difficult for me to find job or to focus on my studies. While my wife works diligently at a local restaurant, she is still seeking for additional part-time employment to support the family. We take strength from one another, but the weight of medical needs, university fees, property rent, and hospital transportation costs (Niagara to Toronto and Hamilton = 1 to 2 hours by vehicle) puts a strain on our finances.

Despite the difficulties, we find satisfaction in tiny moments of connection and support from a group that has grown to feel like home. However, the financial load continues to rise, making it tough to meet our son’s medical demands as well as our daily necessities.

On October 17, my kid had his first chemotherapy treatment. Because he was so feeble even before the therapy, the doctor recommended that he be fed through an NGT (nasogastric tube). We were in the hospital for two weeks while he recovered, and owing to circumstances, I am no longer able to work. Our hospital visits after the treatment were scheduled on a weekly basis to monitor his condition, which added to our dilemma because as newcomers, we still cannot afford a car and do not even have the time to obtain a driver’s license due to time constraints from assignments to studying and attending class, then to hospital visits and caring for my son daily.

He is currently at home, and we have been assigned with administering a normal tube feeding every night from 8 p.m. to 8 a.m., along with his medical prescriptions. However, he is free to eat anything he wants during the day. The dietician suggested him to increase his calorie intake to gain weight and improve his health. He is still underweight and needs to speed up his recuperation due to the upcoming second chemotherapy.

Today, we reach out to you with hope. Your contribution to our campaign can help reduce the rising difficulties we face. Every donation, regardless of size, takes us closer to stability and allows us to focus on what is important: my son’s rehabilitation and the well-being of my family.

In this time of need, your generosity can have a significant impact. Thank you for supporting us, bringing hope, and being a part of our recovery path.

For Donations and assistance please send to my email add:
hdeusebio23@gmail.com

Note: This article was released as part of our mission to raise awareness and inspire compassion for people in need. The information presented reflects the personal experiences of those involved. While we urge readers to contribute to this humanitarian cause, we want to be clear that Magazica has no financial interest, involvement, or stake in any donations made. We are not linked with any fundraisers or monetary contributions related to this topic. Before making any contributions, readers should use their judgment and double-check the information. Our main responsibility is to publicize the cause and raise the voices of people in need.

The post Kent’s Journey: A Father’s Tale of Hope and Resilience appeared first on Canada's Health Magazine.

Initial Diagnosis

In late February 2023, I found a lump in my left breast. After initially ignoring it for a couple of days, I realized how irresponsible that could be if it were cancer. I scheduled an appointment with my family doctor, who wasn’t concerned. “You’re my healthiest patient; it’s probably just a cyst,” she said. We scheduled a mammogram and ultrasound as a precaution.

I remember the ultrasound vividly: introductions, small talk, the wand pressed against my chest. Then, silence. The atmosphere in the room shifted. I saw the mass, highlighted in red, on the screen. A biopsy was scheduled. Soon after, I got the call: “It’s carcinoma,” my doctor said. The diagnosis was metaplastic breast cancer (MpBC), an extremely rare form that makes up less than 1% of all breast cancers. The subtype was adenosquamous carcinoma, which is considered indolent and rarely metastasizes. I followed the standard protocol: lumpectomy and radiation.

My surgeon, one of the top-rated breast surgeons in Alberta, reassured me: “If you have to get breast cancer, this is the one to get.” (It’s not.) He and his nurse treated my case as if it were a mild inconvenience. At one point, I even said, “I feel like I’m just waiting for the other shoe to drop”—and it did.

MpBC develops from different types of cells, complicating diagnosis and treatment. It is often triple-negative, lacking receptors for estrogen, progesterone, and HER2, making it resistant to standard therapies. Early detection and specialized care are crucial because misdiagnosis can give this fast-growing cancer a dangerous head start. After the lumpectomy in June 2023 and radiation, I was back to normal by the fall. I resumed my life, returned to work, and rebooked my canceled travel plans.

The Other Shoe Drops

By late September 2023, I felt a stabbing pain in my left breast. Looking at the scar closely, I thought: Did I cut him off in traffic that morning? There was a new lump at the scar site, and it was painful. The nerve pain through my now-deformed nipple was severe enough to wake me at night. I managed to get an appointment with my surgeon in mid-October.

This is where things went wrong for the second time. With his excellent bedside manner and expensively barbered appearance, my surgeon seemed more focused on aesthetics than my health. He took a quick look at my chest and dismissed all concerns as scar tissue, repeating that my tumour was indolent and telling me not to worry. He even offered to refer me to a plastic surgeon for an implant to fix the breast shape. I reiterated that my main concern was the pain, but he wasn’t moved.

If only he had proposed an MRI. I trusted him because I was told he was good and believed I was dealing with scar tissue. I found a plastic surgeon specializing in post-breast cancer care, one who could correct the scar. Her involvement led to the correct diagnosis.

The Misdiagnosis

Unbeknownst to me, a critical error had already occurred. The initial pathologist, fresh out of school in 2020, had misdiagnosed the cancer. MpBC has six subtypes, ranging from indolent to deadly. He identified my case as the least aggressive subtype when, in fact, it was the second most dangerous. I was assured that a panel had reviewed and confirmed the diagnosis, but I couldn’t accept it. How was this acceptable? I should be satisfied with the process because all of you got it wrong. Why wasn’t an external expert consulted right away, given how rare this cancer is?

The pain in my scar was a rapidly growing tumor. Since my breast surgeon had dismissed my symptoms, I waited months for my plastic surgery appointment to get the scar tissue removed and the scar corrected. On the day of surgery in April 2024, the plastic surgeon looked at me and said, “I’m not sure I should operate. This looks bad.” Well, yes, that’s why I’m here; the pain has worsened too. She immediately took pictures and sent them to the breast surgeon, considering canceling the surgery. He dismissed her concerns quickly and told her to proceed.

Out of caution, she sent pathology a sample of the “scar tissue”. The pathology report showed a change in description, a smoothing over of the language from the indolent to the aggressive. Proceeding with surgery caused the plastic surgeon to cut through an aggressive tumour, increasing the risk of microscopic disease spreading and potentially worsening my odds of survival.

Despite mounting evidence, my surgeon doubled down on the original diagnosis. When I saw him for the last time on July 11, 2024, he said again that there was nothing to worry about and that the cancer was behind me. He said he disagreed with the pathologist’s findings but referred me to oncology “just for formality.” I asked for a CT Scan, which he denied me, saying I did not need any scans.

What’s Next?

Early detection is crucial for MpBC. I should have had a double mastectomy in June 2023, followed by chemotherapy. Instead, I’m undergoing chemo over a year later with no way to measure its effectiveness since the tumour was removed during my double mastectomy in June 2024. No metastases were detected, and it’s unclear if the cancer has spread. Only time will tell.

Minimal clinical data is available, leaving it unclear whether there are too few similar cases globally to generate substantial findings or if the lack of data stems from insufficient interest or resources due to the high cost of studying a rare condition affecting a small population. Either way, the clinical data is sparse.

If I remain disease-free for three years, my chances of recurrence drop significantly. I’m tolerating chemo relatively well, though fatigue, hair loss, and other indignities are inevitable. Who knew losing nose hair would make me feel like a snotty 4-year-old?

The Impact

Beyond the fear of the cancer spreading to my lungs, the physical changes have hit hard. Every year, billions are spent on hair care, lingerie, and breast augmentation. Losing both my breasts and my hair in a few weeks has been hard to process. I had the kind of long hair you see in shampoo commercials. And at 49, I still had an attractive figure. Most days now, I avoid all reflective surfaces. I need a bit more time to show kindness to my new self.

Avoid telling people not to worry because “your hair will grow back.” Shaving heads is a dehumanizing act for a reason. I have never felt so naked. If your loved ones are anything like me, they’ve already looked up the average hair growth rate and compared it to their survival odds to gauge if they’ll have time to grow it back. Ask your loved ones what they need, ask how they feel, listen, and stay away from platitudes.

An aesthetic flat closure post-mastectomy leaves a concave chest. Some people stare. I pretend not to notice. I can’t justify reconstruction and going through multiple surgeries with the risk of complications. It doesn’t make sense to me.

So, a reminder: Don’t judge people by their appearance. First, it’s none of your business. Second, they might not have chosen to look that way. Show some grace.

Lessons Learned

I’ve confirmed something I already knew: I have wonderful, loving friends who keep me grounded. I continue watching my diet, and I exercise as much as the chemo side effects will let me. I remain optimistic—because anything else won’t help. Whether I have two or twenty-five years left, I want them to be pleasant. I will live with the Sword of Damocles overhead, but I’ll try to keep my sense of humour. I’ve learned that being angry doesn’t fuel recovery. Mark Twain once said, “Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.” I chose to change the narrative. I’ll write this down and hope it helps someone else avoid misdiagnosis and encourage clinical trials for MpBC.

Trust your gut. Be your own advocate. Know when it’s time to change doctors, no matter how highly rated they are. Living your healthiest lifestyle will allow you to tolerate treatment much easier. Maybe let your loved ones know you understand their lives haven’t stopped just because you got sick. Some friends may shy away from sharing their challenges out of respect for your illness, but maintaining that sense of normalcy and staying connected is deeply comforting.

Also, “No” is a complete sentence.

In the shadow of my cancer diagnosis, life delivered its cruelest blow: my father’s passing. We had spoken daily for a decade; our roles gently reversed as I became his caregiver. His death, one month after my diagnosis, eclipsed even my cancer battle.

The resilience of the human spirit continues to amaze me. I find myself reflecting on our ability to face the unimaginable with surprising calm—lying on a gurney, waiting for the nurse to walk us to the operating room, knowing our bodies will be changed forever. Week after week, I drive myself to the hospital, offering my arm for treatments so strong they leave me feeling worn out for days. The days before treatment are so stressful, and before you know it, you’ve adapted.

Though I’ve never been one for faith, I sometimes looked skyward after each new setback, whispering, “When I said I could get through this, it wasn’t a dare to make it harder; you can stop now.”

Note: The views expressed in this article are solely those of the author and do not necessarily reflect the opinions or beliefs of Magazica. The information provided is for informational purposes only and is not intended as a substitute for professional medical advice. Please consult with a qualified healthcare provider for any health concerns or before making any decisions related to your health.

The post Fighting Misdiagnosis: A Metaplastic Breast Cancer Story appeared first on Canada's Health Magazine.

Something inside me kindled. I thought about the weight I’d been carrying for some time; the weight of transgressions I could not forgive myself for yet could not name in any satisfying way. I thought about the elusive sense of darkness that followed me all my life for no apparent reason. I don’t believe in a God who rewards and punishes. So why the resonance? Am I carrying some sort of karmic debt I am not aware of?

The truth is, this question has disturbed me for quite some time, floating around the back of my consciousness like a tortured insect. My suffering was at its worst in 2015, when I began to wonder if the surreal pain, I was experiencing represented “visitations” from above. A string of black nights, my heart pounding wildly against its cage, brought with it a sense of turbulence, angst, and chaos nothing short of profound. Breathing was difficult for a very long time, and I had muscle tremors. My head was an inferno. Emotional anarchy seized my body. It was not the prospect of death that frightened me but the raw vulnerability my illnesses brought. I have Lyme Disease. And CRPS. And Autonomic Neuropathy.

Every person experiences CRPS differently, but for me, my biggest problem has been overstimulation. Imagine a car’s engine in high gear when you first power it on in the dead of winter. Before you drive off you pump the gas to power it down. But my “motor” was stuck in that high gear. It is better now, but for a long time any movement – be it physical activity, thinking, or the stirring of emotion of physiological processes – stimulated my system beyond what most people can imagine. I am constantly dealing with overwhelm, and on a bad day, an internal sense of pandemonium. Add to that a sleep disorder and balance issues. I flounder. The dysfunction in my sensory neurons that process temperature, pressure, and vibration means my senses can get confused; I still get sensations like the sting of a bee. The tension goes mad in my body. I have come to wonder if my personal calling is buried in that torment.

Complex Regional Pain Syndrome (CRPS) – otherwise known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain, and its origins are in the brain’s maps or pain maps. (According to the McGill Pain Index, it is considered worse than amputation or childbirth.) In essence, CRPS causes a distortion or enlargement of these maps. Brain maps are responsible for pain multitasking, and regulating functions such as temperature, pressure, vibration, sensation of movement, and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties suffer. This is a simplified interpretation of what I have learned.

Because of this, there is no exact science on how this manifests, so this is where individual symptomatology comes in. The way I see it, “hard neuroscience” defines a set group of symptoms and assigns them to a box called CRPS, but this disorder falls within the realm of soft neuroscience. It’s not western-medicine friendly. Self-education, and a multipronged approach, are central to healing. And that means understanding how your nervous system has gone off the rails because it’s not going to be the same for everyone.

In my case, I was a long-time adrenaline junkie. As if that wasn’t enough, I took a lot of acid and stimulants when I was young, which was really stupid given how sensitive my system is – but you can be stupid when you are young. As a result, CRPS started forming almost ten years ago. Today at 60 I stand on the other side of it, but it is a long road of recovery ahead. I plan to improve my walking so I can be more self-sufficient. I have made some headway in reducing stress, as I have calmed and balanced my nervous system. The trick is to gradually “desensitize” and work your way back to tolerating what is normally healthy, like movement and exercise.

Many of the sites, articles, or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. I have days when my foot feels ablaze or has sensations of cutting or walking on glass when nothing is there. These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on, or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.

Treatment options are abysmal in Canada because very few practitioners are researching it or even know about it – I learned most of what I know from American sources.  But it’s also because if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution. The approach many doctors take – prescribing pills – is ineffective and doesn’t really demand much from the patient. Not only does that framework lock us in as victims, but it is also pernicious for CRPS.

Much of what CRPS challenges us to do cannot be addressed above water. It cannot be addressed within the realms of normality. You have to submerge; ask yourself questions you’ve never asked yourself before and be willing to consider things wildly outside of your frame of reference. You have to forge a path forward that is unique to you, all while feeling like you are fumbling around in the dark. You have to train your brain to calm down and sort out what you are being called to do. In this sense, while CRPS is known as the “suicide disease”, I believe it is also a spiritual calling, in the sense that it calls on you to calibrate and consider your life in a completely different way. To understand that you may be mistaken in what you thought your life was about. As the famed author Thomas Moore once said, “We may discover that we are most ourselves when we are furthest from the self, we think we ought to be.”

I have several identities, and one of them is a cult survivor. I have always felt there is so much we can learn from cult survivors. In most cults, your brain gradually shuts down to its most basic functions as little is required from you other than to follow orders from your dear leader. All the road signs that might warn you or give you a heads-up are ones you don’t recognize anymore because you can no longer think critically, or for yourself. You think other people’s thoughts are your own. Your brain has changed to adapt.

To address CRPS effectively, you need to understand that your brain will also adapt to change in beneficial ways when you adopt a growth mindset in whatever activity or endeavor you are pursuing. Or at least that’s what the prevailing view seems to be these days when for a long time it was different. Doctors and scientists considered the brain to be more like a machine and gave up on stroke patients (as an example) who did not show outward signs of being able to communicate. But CRPS demands a radically different way of thinking. You have to believe your brain can change and heal. And you have to be familiar with a concept called neuroplasticity.

Neuroplasticity, defined by Norman Doidge as the property of the brain that allows it to change its structure and function, contradicts long-held theories in science that claim the brain is hardwired or fixed. “It is more like a plant than a machine,” he has said, meaning it is both adaptable and malleable. And since the origin of pain can be found in the brain’s pain maps, those who suffer from it can find great hope, inspiration, and healing through neuroplastic approaches.

Norman Doidge points out that “one of the core laws of neuroplasticity is that neurons that fire together wire together, meaning that repeated mental experience leads to structural changes in the brain neurons that process that experience.” And so, he explains how the competitive nature of neuroplasticity allows us to weaken chronic pain circuits by reclaiming maps “taken over” by pain processing, using touch, sound, vibration, and visualization. There are numerous tools around to accomplish this, including meditation and visualization, but attitude is key.

With my condition, I have found that finesse is required. I have had to relearn how to breathe properly, as my breathing apparatus was all messed up. As many disciplines link the breath to spirit, I have found myself called to breath work. I am not a religious person, but I have long been drawn to Celtic spirituality, and I have Indigenous roots. With what I know I am still discerning which of my stories are important right now, as well as what my body feels like when I am in it.

The stories that make up my life – random, uncommon, and sporadic – have been one step removed; a looking glass into a ghostlike experience, fueled by a wired nervous system, electric and deeply sensitive. Perhaps this is in part due to the difficulty I have always had owning my life and everything in it.

“How easy it is for life to go one way instead of another,” a character in a novel I am reading says, and I think about how much of my existence has been, in some way or another, about trying to tip the scale. I’ve always been unsettled and obsessed; straining to connect to a world that felt alien. And now that foreign body has come home, calling on me to take heed.

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