‘Anyone can get it’
ORAL HISTORY | AUTUMN AUSTIN
A personal testimony by the executive director of Colors of Lupus Nevada.
My nine-to-five job is working as the marketing and recruiting director for Innovative Health Research. I am also the executive director for Colors of Lupus Nevada. Lupus primarily affects African Americans and women, but anyone can get it.
My lupus story began in December 2012, when I was first diagnosed with the disease — three years after I began having symptoms. It was apparent that something was seriously wrong with me, when I started passing out for no particular reason. I often found myself in the hospital because of the fainting spells. The doctors started running tests in 2009 to find out what the problem was. But they still couldn’t figure it out. Even today, people look at me and say they can’t believe I have any health issues.
Finally, one of the tests came back and indicated that I had a positive Antinuclear Antibody (ANA). This test indicates a person’s autoimmune disorder that affects many tissues and organs throughout the body. That’s when my primary care physician said, “I think you have lupus.” My doctor referred me to neurologist and an eye, nose and throat doctor.
Currently, I don’t have passing out spells — and after all the testing and seeing a lot of doctors, I was diagnosed with the highest form of vertigo. Now, I have a multitude of lupus symptoms that include hair loss; sensitivity to sun and UV rays; rashes; nausea and dizziness. Also, I get ulcers like canker sores in my mouth and ears. My joints stiffen and I suffer with arthritis. Often I also have unexplained fevers. A lot of people say that lupus mimics other diseases. Many people with lupus don’t appear sick until we start having a flare up.
Most of the symptoms are internal, and you won’t necessarily see the effects unless there is a rash — sometimes is in the shape of a butterfly — or hair loss and pain from arthritis. The tissue around my heart is also inflamed and I also have fluid around my lungs.
Unfortunately, Las Vegas is not a friendly place for people with lupus because of the heat and sun. I have maintained because of the medication I take. I am currently having a lupus flare up that has lasted three weeks. Usually, I take prednisone when I have a flare up, but not too much because it is not very good for your system if used for an extended use of time.