She Became a Top Ballerina...and Had No Idea She Had AS
People with ankylosing spondylitis don't usually become professional dancers. Alicia Graf Mack did that and more.
Alicia Graf Mack jokes that she came out of the womb dancing. “I always tell people that dance is in my DNA,” she says. And given how she's defied the odds every jeté of the way, she's absolutely right.
Mack began formal dance training at age 2 1/2, and very quickly gravitated to ballet. It just felt like a natural fit. Her skin color, however, made it an unlikely one. Historically, classical ballet has not been a space for African-American dancers. “Even as a teenager, I’d go to a ballet and maybe see one dancer of color,” she says.
Nonetheless, Mack was committed and by the time she was a teenager, she was accepted into the prestigious Dance Theater of Harlem. She trained eight hours a day and took correspondence classes to earn her high school diploma. Her future as a professional ballerina seemed clear.
But at age 20, Mack began experiencing unusual knee swelling. An MRI revealed a slight cartilage tear, so she underwent a knee arthroscopy, a surgical procedure where doctors insert a tiny camera into the knee and trim the damaged cartilage.
Yet despite her surgeon’s assurance that she’d be up and dancing again within six weeks, the pain and swelling persisted. “It got to the point where I couldn’t even bend my knee, and then the swelling spread to my hip and ankle,” she recalls.
What neither she nor her doctor realized at the time? Her symptoms were actually early signs of ankylosing spondylitis (AS), an inflammatory form of arthritis that usually affects the sacroiliac joints in the spine (they connect the spine to pelvis). Over time, it can eventually cause an overgrowth of bone that can leads to spinal fusion.
Unusual Symptoms Delayed an AS Diagnosis
Mack's symptoms weren't typical for AS. First, while knee and other joint pain can occur with AS, the first signs most commonly start in the lower spine. Second, being African-American also meant that Mack’s doctors may be less likely to suspect AS was the cause of the inflammation. Doctors look for the HLA-B27 gene in potential AS patients, because it is a strong indicator of AS in Caucasians. Its presence is less likely in other ethnic groups, but having the gene is one more indicator to add to the symptoms and imaging evidence. Mack doesn’t remember ever being tested for HLA-B27.
Over the next year, she saw five different rheumatologists, all of whom seemed mystified by what was going on. “My entire right leg was so swollen and painful I was hobbling around on my left,” says Mack. But doctors were dismissive of her symptoms, especially given her young age. What these doctors didn’t connect, was that though Mack seemed too young to have serious joint problems, she was actually prime age for an AS diagnosis. It’s possible to be diagnosed at any age, but it most commonly appears between the ages of 17 and 45, and especially in the teens and 20s.
One of Mack’s cousins, who happened to be a rheumatologist at University of California-San Francisco, was able to have a team of specialists there analyze her bloodwork. They diagnosed her with reactive arthritis—a relative of AS that causes joint pain and swelling usually triggered by an infection elsewhere in the body. Unlike AS, it doesn’t usually affect the spine or sacroiliac joints, and since back pain still wasn't her primary complaint, the diagnosis seemed to fit. Mack responded quickly to treatment, a combination of the prescription medication Azulfidine (sulfasalazine) and the prescription anti-inflammatory Celebrex (celecoxib ), along with physical therapy.
Her Body Took a Turn for the Worse
Mack took a break from dancing then—for four years, in fact—and proceeded with intense physical therapy in addition to a second knee surgery and foot surgery as well. In addition to healing her body, she focused on college, graduating with a major in history from Columbia University in 2003. Then she immediately resumed her intense dance career, rejoining the Dance Theatre of Harlem for a year and eventually the prestigious Alvin Ailey American Dance Theater in 2005.
That same year, at the age of 26, Mack woke up one morning and discovered that the world around her had become a fog. She was soon diagnosed with uveitis, a form of inflammation in the eye that can cause blurred vision—a common complication of AS. It was then that her team of physicians finally put the pieces together: Mack had AS. Looking back, Mack said she'd always had aches and pains in her back, but always assumed it was a result of dancing, not something more serious.
Despite the delay in proper diagnosis, Mack and her doctors were optimistic. Once again, she responded well to her new treatment regime—a combination of the biologic Humira (adalimumab) and methotrexate, a drug that helped reign in her immune system, as well as a steroid eye drops to relieve eye inflammation.
This cocktail of medications allowed her to continue her physically demanding schedule of dancing up to 10 hours a day. But behind the scenes, the disease was taking its toll. “There were days spent icing my feet to reduce my ankle swelling, and over the years I took so many steroid eye drops that I now have cataracts,” she says. So she decided to give her body another break and pursued a master’s degree in nonprofit management at Washington University in St. Louis. She graduated in 2010.
The Stage Kept Calling Her Back
The lure of the dance world was once again too strong for Mack, and in 2011 she returned to Alvin Ailey. She had three years with the group before a devastating back injury in 2014 brought her dance career to a halt once again. “I had completely ruptured a disc that was wrapped around my nerve, and I was in excruciating pain,” she says.
Barely able to move, she underwent intensive back surgery and then officially gave up her professional dance career. “I felt like I’ve done everything, I’ve fought this disease, I feel like a success, but the AS had caused so much deterioration in my lower spine that I didn’t want to keep dancing on it,” she explains.
But the end of this chapter in her life led to an exciting new one: Mack got pregnant while she was recovering, and in 2015 she and her husband Kirby welcomed baby boy Jordan, and a couple years later, baby girl Laila.
Then, in 2018, Mack saw a job opening that piqued her interested at The Juilliard School. It was for the position of director of the dance department and the hiring process included a national search. Mack applied and got the job, making her just the fifth director in Juilliard’s history, and the first black one. This, she says, sends a clear a signal to the world that Juilliard is leading the charge when it comes to diversity and inclusion. “Throughout my training, I was often the only person of color in my class,” she says. “Now, we’re seeing changes in the field, which is a beautiful thing.”
Today, Mack’s AS is well-controlled, but she still struggles with physicians who don’t quite “get” the scope of her disease. “It’s very easy to look at me and believe I’m not in pain because I don’t have huge amounts of swelling and I’m very, very flexible,” she explains. “I have yet to find a rheumatologist that really understands the body of an athlete, and how a small pocket of swelling can really affect your performance.”
Mack hopes her story will reach other young athletes living with symptoms that could be caused by undiagnosed AS. She hopes they will be inspired to push for more testing, even if doctors want to blame their inflammation on activity-related injury.
Mack knows how important it is to feel supported when you’re living with chronic illness. “For years, I just felt like AS was something I should tackle on my own,” she says. “But with the advent of social media, I realized how many black women out there are suffering from this disease, and how amazing it is to ask questions, encourage and talk to one another.”
Two decades ago, when Mack was dancing her way to the top, she never would have imagined she’d be the director of dance at Juilliard. She always assumed she’d dance her way through her career. AS forced her to grow both personally and professionally in many different ways.
“(AS) has brought about so many positive things in my life—I’ve developed much more patience with my career and with my idea of how my world should be, because day-to-day I don’t know what my body’s going to feel like,” she says. What she does know though? Dance will always be a part of her.
Charis Hill contributed to this article.