How an Autoimmune Disease Changed One Woman's Life

When she was 26, Robin Levinson’s immune system started attacking her body. Crippled and confused, she discovered she’s one of millions of young women racked by an autoimmune disorder. Here, her quest to learn why these mysterious illnesses target females in their 20s and 30s.

Auto immune disorder health going rogue sept 2014

(Photo: Getty Images)

Two years ago, at the age of 26, I sat on a medical examination table, nervously tugging my blue hospital gown over my bare legs. Flushed with shame and confusion, I told the ER doctor my knees hurt and that I’d had a fever for five days. My limbs were covered in a red rash that was hot to touch, and, I told him in a weak voice, I had painful sores on my vagina. After a cursory glance at the two eraser-head-size white blisters, the doctor diagnosed me with herpes. I protested: I had a boyfriend, we were faithful. How could I have an STD?

I imagined him mentally checking off boxes in his head: young woman, check; sexually active, check; naïve, check. “I could give you blood work, but it would just be a waste of time,” he said as he wrote a prescription for antivirals. “This should clear it up in a few days.” But it didn’t. The two canker-like sores multiplied to six ulcers the size of quarters. The slightest movement gave me searing pain, and it burned so bad when I peed that I screamed. Five days later, I went back to the ER and demanded blood work. A different attending physician politely asked, “Can I see?” while I placed my feet in the stirrups. He took one look and gasped. “I don’t know what that is,” he said, “but it’s not herpes.” In total, it took six doctors, two ER visits and a handful of misdiagnoses, from strep throat to a chancroid, a tropical STD, to finally figure out I have Behçet’s syndrome, one of over 80 known autoimmune diseases, including lupus, rheumatoid arthritis (RA) and Crohn’s disease.

Each one affects a different part of the body. In Behçet’s, the immune system inflames the vascular system—the network of vessels that carry blood to all our vital organs. When that happens, a whole host of symptoms can ensue, including headaches, joint pain and ulcers on any part of the body where there’s mucus: mouth, genitals, even eyes. There’s no cure. Some people will struggle with flare-ups their whole life, while others will go into remission for years at a time. In severe cases, the inflammation can cause blindness and blood clots.

A healthy person’s immune system is like an army that sends soldiers—white blood cells—to fight off disease and infection. But in the case of an autoimmune disorder, the immune system sends Rambos that target normal, healthy cells instead of foreign bacteria, germs and viruses. My disease came on like a surprise attack. I was in the second semester of journalism school in Ottawa, and I was strung out on fear and ambition. Professors kept warning us how hard the field was, and how most of us wouldn’t make it. I aced my classes, worked as a TA and freelanced in my spare time. I fuelled the days with coffee and wound down at night with beer. I went weeks without cooking or even eating vegetables. Right before I got sick, I was in the middle of a perfect storm of deadlines: a story due for class, two freelance articles in the works and papers to grade. Then I got a cold, and within three days, my joints were so inflamed, I was hobbling around the house bow-legged, like John Wayne.

Although comprehensive research covering all the autoimmune diseases doesn’t exist, studies on individual conditions suggests they’re rising fast. Research published by the Canadian Journal of Public Health found a 900-percent increase from 1996 to 2010 in female Ontarians aged 25 to 34 with RA. And Type 1 diabetes, which is often known as juvenile diabetes and is not connected to obesity, is expected to grow by three percent each year worldwide.

Debates about the causes of autoimmune disorders have proliferated in lockstep with the increase in occurrence. Researchers have linked them to stress, diet, genetics, even environmental factors like vitamin D deficiency. Mine may well be genetic: my father has Type 1 diabetes, and his grandmother had RA. But the most shocking fact I learned is that women are three times more likely than men to suffer from one—and we often get them at the peak of our health, in our 20s and 30s.

Since 2007, Eleanor Fish, the Canada research chair for women’s health and immunobiology, has devoted her career to answering the question, why women? Through her campaign, SeXX Matters, she works with female-autoimmune scientists on research initiatives. “It’s long overdue that women take to the streets to raise awareness about autoimmune diseases and their burden on women, just as we did with breast cancer,” she writes in a call to arms for the project.

When I phone her to ask why females are so much more susceptible to AIs, she tells me there’s no easy answer. “Women tend to be ignored,” she says. “Researchers often take a one-size-fits-all approach without accounting for the many ways that men’s and women’s bodies are different.” Studies have linked estrogen to lupus (a chronic inflammatory disease that can affect not only joints but organs such as the kidneys and lungs), Sjögren’s syndrome (a disease that affects moisture-secreting glands and can result in severely dry eyes and mouth) and RA. Plus, women tend to get autoimmune disorders at the height of their fertility, in their 20s or 30s, when their estrogen levels are sky-high. But, Fish reiterates, we still don’t know why, or how, that happens: “We’ve identified some of the likely contributors—sex hormones and the X-chromosome—but in terms of specifics, we have very limited knowledge. If you were to survey women in Canada, I think most would be dumbstruck as to why this issue isn’t being studied more aggressively.”

While researching this piece, I spoke with women who discovered this frustrating reality for themselves. Before her 26th birthday, Laura Moses, now 32, began having pain in her arms. So much so that it was nearly impossible to brush her teeth. She assumed it was normal joint aches from gardening, but when it didn’t go away, she went to the doctor, who confirmed that the pain was coming from her joints—she had RA.

Her older sister, meanwhile, Tracy Reid, now 33, began showing symptoms when she was 28. She was on her honeymoon, lying on the deck of a Mediterranean cruise ship, when she glanced at her hand and noticed a few of her knuckles had turned black. At first, she thought she had contracted a foreign bug, but when the blackness spread to the rest of her knuckles and hurt to touch, she sought medical help. A few months later, she was also diagnosed with RA.

Reid was worried her new disease would interfere with her plans to start a family—the drugs that her doctor wanted to put her on could cause fetal death. Instead, while trying to conceive, she went on Enbrel, a revolutionary drug that slowed the progression of her disorder. A year-and-a-half later, she was pregnant and felt great. After her first trimester, she went off the drug and her symptoms remained in remission—a common occurrence for pregnant women (the precise reasons for this are still unknown). But as soon as she gave birth, she had a nasty flare-up—another commonality doctors are still struggling to understand. She went back on Enbrel, which isn’t recommended for nursing mothers (there’s a chance of transmitting the drugs to the baby), so she had to make a choice: stay off meds and breastfeed, or take medication to keep her disease under control, and bottle-feed. “Breastfeeding is the best for the baby, but if I can’t take care of myself, I can’t take care of the baby,” she says. Moses, too, had a baby and struggled to care for her. She couldn’t even pick up her purse, let alone a child. “The first thing I did when the drugs started working was lift my daughter—I hadn’t done that in six months. It was a very emotional thing.” Both sisters continue to manage their RA with meds, and Reid is expecting a second child at press time.

Forty years ago, the best way to treat most autoimmune disorders was with prednisone, a type of steroid that affects your adrenal cortex, which helps regulate the immune system. But while it can dramatically decrease inflammation, which causes most of the symptoms of autoimmune disorders, it comes with serious side effects: brittle bones, thinning skin, depression and even diabetes.

“The disease has devastating effects, and while the complications of prednisone can sometimes seem worse than the disease itself, the side effects can be mitigated,” says Dr. Claire Bombardier, who is the rheumatology division director at the University of Toronto. The latest treatments fall into two categories: disease-modifying anti­rheumatic drugs (DMARDs) and biologics. Both work by subduing the immune system so it no longer attacks itself. They’re often used to treat RA, Crohn’s disease and lupus. The drawback is that, while they keep the immune system from fighting itself, they also keep it from fighting off everyday infections and disease. “A cold for someone else could mean pneumonia for someone like us,” Moses says.

Although DMARDs do wonders for most patients, Bombardier says, they don’t work for all. “The DMARDs affect multiple pathways of the inflammatory process, some of which have nothing to do with certain diseases,” she tells me, which can be like trying to put out a single house fire with a rain shower. When they fail, doctors turn to biologics, which were introduced in the early 2000s as a more targeted approach for patients who are unresponsive to other treatments. Biologics are genetically engineered from human cells to home in on specific parts of the immune system. Enbrel, which Reid took, specifically targets proteins called cytokines. “Biologics affect a more targeted pathway,” Bombardier says, so they work like a fire hose, aiming right at the fire. “They really changed the landscape of what we do.”

These more advanced treatments can take a while to kick in, but once they do, they not only stop inflammation, they can even slow the progression of autoimmune diseases. “Now we’re saying, ‘OK, we need to use prednisone, but we need to use it properly,’” Bombardier tells me. Often, a patient in the middle of a flare-up will go on a short dose of prednisone to reduce the worst symptoms, while waiting for the longer-acting drugs to kick in.

But they come at a cost. In Canada, biologics average between $20,000 and $30,000 a year, most of which is covered by private insurance, or through provincial health care for the elderly or poor. For the young and middle class, like Reid and Moses, a marketer and a school administrator, respectively, having a job with benefits is essential. “I’ve got one child now, and a second one on the way. Would I like to stay home? Yeah, but I need my benefits,” Reid says matter-of-factly.

In many ways, I was lucky. I haven’t had a bout in over a year, and when I did, my treatment consisted of the relatively benign prescription Colchicine, which gave me no side effects. Still, the diagnosis changed my life. I connected with a rheumatologist, who sat me down and asked me not just about my physical symptoms, but about my lifestyle as well. “Journalism is a very stressful career,” she warned me (as if I didn’t know). “You might need to consider a different one.” I’d dreaded those words since I first got sick. I had missed three weeks of school, but I had already invested so much into my education and career, I couldn’t fathom giving up. I ignored her advice. Weeks after getting diagnosed, I started an internship at the National Post, followed by another on the East Coast, followed by a trip to the U.S. to cover the 2012 Democratic National Convention.

That summer is still a blur. Although I barrelled on like nothing had changed, every ache, pain and sniffle made me paranoid I was about to be knocked on my ass, again. I felt like I was standing on train tracks, waiting to see if I was going to get hit. By the fall, I knew I had to change my life if I wanted to stay healthy. So I compromised. Instead of chasing after gold stars and A-pluses at school, I would work only on projects that mattered to me. I learned that if you can’t do everything, do the things that matter. Now, I guard my downtime ferociously and I say no to friends if I’m not up for hanging out. When I’m feeling well, I’m filled with relief and gratitude, knowing my health is a gift that could be taken away at any moment. That’s a lesson everyone learns at some point in their lives—I just learned it early.