When J.R. Brooks’ back starting hurting in high school, he shrugged it off as just a bad back. He played many sports and thought he’d just sprained his back in a game of basketball.
However, what began as an on-and-off stiffness eventually led him to struggle to get in and out of his car.
“I was a very stubborn, typical, I don’t need to go to the doctor this is fine, for a long time and then the pain came and it wouldn’t go,” says Brooks.
In his late 20s, after working with his doctor, radiologists, and a rheumatologist, Brooks got diagnosed with ankylosing spondylitis, or AS.
Ankylosing spondylitis
AS itself is a form of spondyloarthritis, an inflammatory arthritis usually involving the spine, but can also affect hands, arms, legs, and feet. To get spondyloarthritis, there needs to be a combination of genetics and environmental factors.
In Canada, around 300,000 people are afflicted with spondyloarthritis.
Dr. Diane Mosher, a rheumatologist says that “90 per cent of patients who have [AS] have the gene HLA-B27. But it alone is not sufficient to cause the disease.”
However, if a person is already HLA-B27 positive, the gene in combination with certain infections, such as chlamydia, can result in spondyloarthritis.
“A particular one called reactive arthritis, which is another subtype, we know can be caused by chlamydia infection,” says Mosher. “So if you’re genetically predisposed and then you actually get the infection then you can develop spondyloarthritis.”
After diagnoses
Getting the diagnosis of AS was a relief to Brooks — he could finally put a name to the pain he was experiencing. But he was also faced with bad news.
“The first thing they said was, ‘This is something that’s not curable’ — this is for life. But then you learn a little more and realize that it doesn’t have to be a life sentence of pain,” says Brooks.
When Brooks was originally diagnosed, his extroverted and athletic lifestyle took a huge hit.
“I wasn’t able to do the things that I wanted to do,” says Brooks. “I was still playing sports in my 20s and suddenly I couldn’t. That was a big part of my social life which I didn’t really realize —that’s how I saw a lot of the people in life.”
He stopped going out, something Brooks found very difficult as an extrovert.
“At the end of my work day, I kind of just wanted to go home —get some rest,” says Brooks. “I was alone. I was living alone.”
Though his disease is incurable, it is certainly treatable. After several unsuccessful medications, Brooks was started on the biologic Humira, a drug designed to treat the inflammation caused by AS.
Humira helped Brooks get his life back. He still has flare-ups, including in his right knee and in a pinky. The pain is minimal compared to what he used to experience.
Now Brooks is the co-owner of a local Kombucha company called True Büch Kombucha. The company brews, manufactures and bottles the tea beverage in Northeast Calgary.
After starting Humira and his successful company, Brooks considers himself lucky. If anything, AS has made Brooks more conscious of his health.
“I eat healthier than the average person. I probably have more exercise — I’m forced to — and I’m stretching and stuff like that,” says Brooks. “If I do those things it doesn’t really impact my day-to-day life.”
Living with psoriatic arthritis
Along with Brooks, Denise Forwick-Whalley has spondyloarthritis but was diagnosed with a subtype called psoriatic arthritis.
Denise Forwick-Whalley was first diagnosed in 2014 with AS, but her diagnosis changed to psoriatic arthritis in 2016. Photo courtesy of Denise Forwick-Whalley
“Up to 30 per cent of people with psoriasis will develop psoriatic arthritis,” says Mosher. “Most of the time usually you develop psoriasis and then the arthritis, but you can develop arthritis before actually developing psoriasis.”
This is what happened to Forwick-Whalley, who was diagnosed with the disease in her early 40s. By the time she was diagnosed, she could barely walk and was in terrible pain.
“I was a little bit surprised,” says Forwick-Whalley. “It kind of started with some lower back pain and I thought it was my Crohn’s, but it progressed very quickly.”
Since 2002, Forwick-Whalley had already been diagnosed with Crohn’s disease (an inflammatory bowel disease), but since her diagnosis of psoriatic arthritis, she would be sent on a very difficult journey.
Her first course of treatment was also Humira, but it did not last for long.
“It helped for about a year and then like amazing — I went from having trouble walking to feeling a little better,” she says. “Like, okay I can have a life again, but it stopped working — and my health just slowly deteriorated.”
Since then, she’s been on five disease-modifying antirheumatic drugs, or DMARDs, and three biologics. Currently, she is on a biologic called Cimzia, and Leflunomide, another DMARD.
“I’m still not pain-free but it’s helped with my mobility. And they said this is probably the best they’ll be able to do,” she says.
Effects on mental health
Because of her psoriatic arthritis, Forwick-Whalley had to leave her job as an instructor for the Diagnostic Laboratory Programs at NAIT. She developed anterior uveitis in her eyes, which caused severe light sensitivity, and resulted in her having to turn the lights off in her office.
“I realized that maybe I couldn’t manage work in this disease, which was really hard on me,” says Forwick-Whalley. “I was enjoying my job and I love to work.”
Not working and dealing with her disease also deteriorated her mental health.
“I thought I was handling it well but I was very teary-eyed — crying all the time,” she says. “I didn’t really think much of it, to be honest.”
When she went back to work for a brief 6-month stint, she thought she would feel better, but found herself feeling even worse, becoming depressed and suicidal. She hasn’t worked since.
Nevertheless, she considers herself lucky.
“I’ve qualified for Canada Pension Disability and the Canada Disability Tax Credit,” she says. “I also have long term disability through work through a private insurer.”
“I am extremely lucky,” says Forwick-Whalley. “There are many people that don’t have [private insurance], and all they qualify for is Canada Pension Disability and they have to try to live on [that alone]. I think their life would be devastated by this.”
She visits a psychologist and is on antidepressants, a combination that she says has helped her mental health
“My rheumatology clinic got me in touch and referred me to the Addictions and Mental Health clinic and I now am seeing a psychologist for free until I get stabilized,” says Forwick-Whalley.
Both Brooks and Forwick-Whalley emphasize the importance of reaching out for emotional and medical support.
Brooks found solace in the Canadian Spondylitis Association or the CSA. With no prior knowledge of his disease before his diagnosis, he found himself wanting others to talk to.
“I was really upset and depressed and had no one to turn to,” says Brooks. “[The CSA] allows people to connect that are going through the same thing. It’s a really good network of people that are going through what you’re going through — and can show you that it’s manageable and you can have your life back.”
Forwick-Whalley says that reaching out and applying for disability is essential, no matter how hard it may be.
“It’s probably one of the most stressful things in this whole process was the fear of being denied,” she says. “I just encourage people to take the time and fill the paperwork out to the best of your ability. Don’t do it haphazardly.”
Early diagnosis is key
Because Brooks was diagnosed much earlier than Forwick-Whalley, his life with spondyloarthritis has been much different.
Dr. Mosher concludes that early diagnosis is essential for those who may have spondyloarthritis.
“We know that early diagnosis and early treatment is important because it changes outcomes for our patients.”
May is Spondyloarthritis Awareness Month in Canada, and May 4 is World Ankylosing Spondylitis Day.
To find out more, visit the Canadian Spondylitis Association at http://www.spondylitis.ca/
Editor: Megan Atkins-Baker | matkins-baker@cjournal.ca