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.
麦克2。5岁开始正式的舞蹈训练,和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.
什么是她或她的医生的时候实现呢？她的症状实际上是强直性脊柱炎（AS）的早期迹象，关节炎的一种炎症形式通常会影响脊椎（它们所连接的脊柱骨盆）骶髂关节。随着时间的推移，它最终会导致骨了可导致脊柱融合的过度生长。
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.
在接下来的一年，她看到五个不同的风湿病，所有的人似乎对什么事情感到迷惑不解。“我的整个右腿被如此肿胀和疼痛，我身边蹒跚我左边，”麦克说。但医生们对她不屑一顾的症状，尤其是考虑到她的年纪。什么这些医生并未连接，是，虽然麦克似乎太年轻了，有严重的关节问题，她实际上是黄金年龄的AS诊断。这是可能被诊断于任何年龄，但17和45，特别是在青少年和20岁之间的年龄，最常见出现。
一个麦克的堂兄弟，谁正好是在加州大学旧金山分校风湿病的，能有一个专业的团队有分析她bloodwork。他们与反应性关节炎-A作为相对引起关节疼痛和肿胀通常由身体其他部位的感染引发的诊断她。与AS，它通常不会影响脊柱或骶髂关节，由于背部疼痛仍然不是她的主诉，诊断似乎适合。麦克迅速对治疗有反应，处方药物柳氮磺胺吡啶（柳氮磺吡啶）的组合和处方抗炎葆（塞来昔布），与物理疗法一起。
Her Body Took a Turn for the Worse
麦克休假从跳舞当时的四年，其实和在除第二膝盖手术和足部手术以及强烈的物理疗法进行。除了医治她的身体，她专注于高校，从2003年哥伦比亚大学历史上的重大毕业之后，她立刻恢复了她强烈的舞蹈生涯，重新加入哈林的舞蹈剧场一年，最终著名的阿尔文·艾利美国舞蹈剧院于2005年。
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.
药物的这种鸡尾酒允许她继续她的体力要求跳舞高达每天10小时的时间表。但在幕后，病情明显造成了伤害。“有花结冰我的脚，以减少我的脚踝肿胀天，多年以来，我花了这么多的类固醇眼药水，我现在有白内障，”她说。于是，她决定给她的身体另一个突破，并在圣路易斯华盛顿大学非营利管理追求的硕士学位。她毕业于2010年。
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.
勉强能移动，她接受了密集的背部手术，然后正式放弃了她的职业舞蹈生涯。“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.
然后，在2018年，麦克看到了空缺的职位引起了她在茱莉亚音乐学院感兴趣。这对舞蹈部主任的位置和招聘过程包括国家寻人。麦克应用并得到了这份工作，使得她刚刚在茱莉亚音乐学院的历史上第五主任，第一位黑人之一。这一点，她说，发出了一个明确的信号向世界表明茱莉亚音乐学院的领导负责，当谈到多样性和包容性。“在我的训练，我常常色彩在我班上的唯一的人，”她说。“现在，我们看到在该领域，这是一个美丽的东西的变化。”
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.
麦克知道它是多么的重要，当你有长期病患的生活感觉被支持。“多年来，我只是觉得AS是我应该对我自己解决，”她说。“但是，随着社交媒体的出现，我才意识到有多少黑人妇女在那里有患这种病，以及如何惊人的是提出问题，鼓励和相互交谈。”
二十年前，当麦克在跳舞她的方式顶端，她绝不会想到她会跳舞的茱莉亚音乐学院的主任。她一直以为她会通过她的职业生涯跳舞她的方式。AS强迫她在许多不同的方式在个人和专业成长两者。
“(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促成了这篇文章。