By S. Ann Johnson

Special to the AFRO

Training for an upcoming biathlon, marital artist A. Adar Ayira ran 10 miles one morning some three years ago. She soon felt very tired, but who wouldn’t after running 10 miles, right?

“By that afternoon, I was walking with a cane,” Ayira recalled. “By that evening, I couldn’t walk at all. It took about a year before I stopped walking with a cane. This was my first lupus flare, and I didn’t know it was a lupus flare.”

Lupus is a chronic and potentially fatal autoimmune disease that can cause inflammation, pain and damage in various parts of the body, typically the skin, joints, blood and kidneys. There is no cure. There is no known cause.

The Lupus Foundation of America estimates that Ayira is one of 1.5 to 2 million Americans living with lupus, a disease common in women of color.

More than 90 percent of people with lupus are women, and the disease is more common in Latino, Asian, Native or African Americans than in Caucasians, according to the LFA.

Ayira, an African-American woman, was diagnosed with the disease March 13, 1999.  

“I found out the day before my birthday that I had lupus,” she said. “I went to my doctor complaining about fatigue when I was in the ring sparing. When I hit someone or kicked someone, I would hurt, which is totaling defeating the purpose,” she continued with a laugh. “I’m supposed to be defeating them, but I could not hit someone without hurting [myself].”

After a series of tests, Ayira’s doctor determined that her extreme fatigue and sore joints were symptoms of systemic lupus, a more severe form of the disease that can affect any organ, according to the LFA.

A very active person who defined herself by her athleticism, Ayira kept training and competing in martial arts.

“For years I kept trying to do it at the same level that I had done it before because I was in denial that my life was going to have to change,” she said. “Even when I felt my fatigue getting worse, my joint pain getting worse, it wasn’t until I ran the 10 miles [that I stopped].”

Ayira did not immediately connect her joint pain to lupus. An orthopedic doctor, who was not aware that Ayira had lupus, treated her condition as an athletic injury.

Ayira, who is trained in kenpo, ju-jitsu and tai kwan do, has no regrets about her active lifestyle or that 10-mile run, which may not have caused, but in due course, resulted in a life-changing lupus flare.

 “As all of my doctors stated,” she said, “had I not really been in good condition, my flare might have been worse; my flares might have been worse.”

“So, I definitely think being active helps,” she added, “even though it hurts to work out physically and sometimes the fatigue is overwhelming. Just doing something everyday at the very least boosts my spirits.”

Ways to cope

No longer physically able to compete, Ayira channels her athletic energy with daily work-outs in the gym and yoga classes at Charm City Yoga in Baltimore’s Fells Point area.

“These days I define myself as an aging athlete,” she said with a laugh. “I feel so grateful that I’m able to get in a gym, walk without a cane, do yoga.

“Yoga continues the mind, body, spirit connection that I always found in martial arts,” she continued.

Besides yoga, lupus medication has also helped Ayira better cope.

“I went off of lupus medication, and I lasted for almost a year,” she said. “By the end, I was begging my doctor to please put me back on meds again because I could see a real change in my life. I didn’t have the quality of life that I have on meds that I had off.”

Living, fully

Ayira’s day-to-day life includes running her 16-year business, Core Concepts, a nonprofit consulting firm that provides workshops and trainings, skills development, technical assistance, organizational and program development, and fundraising services to grassroots groups.

When she isn’t providing nonprofit advice, Ayira is sharing her poetry at Baltimore area open mic venues. She often shares a piece entitled “My marriage to the wolf,” an earnest account of her daily struggles with lupus, the Latin word for wolf.

“I am glad that I have a forum like poetry that I can bring issues to life for people like the issue of living with lupus,” she said, “so that people can get to know what it is and that people can live good lives with it as long as they take care of themselves.”

Nowadays, Ayira’s sparing partner is lupus.

“Some days lupus wins,” she confessed, “but as long as most days I’m the one winning than I’m alright. I didn’t give up fighting. The battle that I’m in is much bigger than anything that ever happened in the ring.”

That fight will continue Sept. 13 as Ayira participates in the Lupus Foundation of America’s fundraiser and awareness event, Walk for Lupus Now Baltimore 2008, which starts 9 a.m. at Harry & Jeanette Weinberg Family Center at Stadium Place, located at 900 East 33rd St.

Ayira and her team of family and friends, Ayira Alliance, will walk in next Saturday’s event. And, they have already raised more than $600 for the LFA.

“In the African American community, this isn’t an illness that a lot of us have familiarity with,” said Ayira, “and when you think about the fact that it disproportionally affects us, we should know more about it and be a lot more supportive for those organizations that are actually doing research to make it easier to live with and maybe even find a cure for it.”

To donate to team Ayira Alliance, go to www.walkforlupusnowmd.kintera.org, under “Get involved,” click “Donate to a walker,” type in “A. Adar” under first name and/or “Ayira” under last name. 

To listen to “My marriage to the wolf,” go to www.myspace.com/ayiraspokenword.