Spring 2019 | By Nicole Dudenhoefer ’17
Azmia Magane ’07 ’09MSW’s grandfather often described her as a bulldog with a piece of meat. “Once I get ahold of something, that’s it. It’s happening,” she says. “I’m not letting it go.”
That fighting spirit has driven the psychology and social work alumna to make a lot of things happen over the past three years. Just take a look at her resume. She’s been a MAC makeup artist in New York, working at major events such as Fashion Week, and has freelanced as a writer for numerous publications, such as Teen Vogue and The Source.
She currently serves as an editor at MuslimGirl.com, the largest website for Muslim women in the west, which led her to develop the first collaboration specifically for Muslim women by an American beauty brand, a limited-edition capsule collection of halal-certified nail polishes. And she’s made an impact on a legislative level by working with officials to get Muslim Women’s Day recognized in Orlando and the state of Florida.
But now Magane is fighting even more battles on a daily basis. Aside from maintaining her full-time job as a social worker, she lives with lupus, a chronic auto-immune disease that causes inflammation, pain and damage in different areas of the body. She was diagnosed in February 2018, after two years of doctors’ visits, and having seven lymph nodes and a mass removed from her chest.
“I just wanted to use my negative experience and turn it into a positive experience to help people. I figured I went through this experience for a reason.”
But Magane’s battle with lupus extends beyond herself. Last year, she became an ambassador for the Lupus Foundation of America. As a part of a pilot program for the Florida chapter of the organization, she collaborates and organizes with a team of 16 other volunteers to help raise awareness and effect change for those living with lupus.
“I had such a horrible experience getting diagnosed that it wasn’t something I wanted anybody else to go through. So I decided to apply [for the volunteer program,]” Magane says. “I just wanted to use my negative experience and turn it into a positive experience to help people. I figured I went through this experience for a reason.”
It’s not clear how many people are affected by lupus, but the LFA estimates between 300,000 and 1.5 million people in the United States have it. One of the biggest problems with treating lupus is recognizing it in the first place because symptoms present differently in each person.
“[Lupus is] a very difficult disease that even medical practitioners don’t understand.”
“Sometimes that can make people look like they’re faking it, but that’s not the case at all. It’s just a very difficult disease that even medical practitioners don’t understand. It doesn’t have a cure, they don’t know what causes it exactly and there are very limited treatments for it,” Magane says.
There is only one FDA-approved drug that is specifically targeted for lupus — Benlysta, which was approved in 2011. The treatment must be administered intravenously and doesn’t work for everyone. It usually takes many years and assessments from several different specialists before someone can receive the proper diagnosis and treatment.
“Until you’re affected by this it is very hard for people to understand,” Magane says. “[Most people don’t] know what it’s like to end up in the hospital every month for a week at a time. It’s hard to explain that to my other friends and family. They see it, but they don’t see it all the way.”
Magane’s LFA ambassador position is giving her the opportunity to help others see this “silent illness.” But her main goal is developing a patient advocacy program that helps others learn how to navigate the diagnostic process, work with healthcare professionals and deal with insurance companies — often taxing work for someone managing a physically, mentally and emotionally draining illness.
“Your doctors may have gone to medical school but you’ve lived in your body your whole life and know it best.”
“These are things I’ve personally dealt with. I’ve had a $48,000 hospital bill sent to me before. Last year, I owed $136,000 in out-of-pocket medical expenses, after insurance,” Magane says. “Before I was diagnosed I even had some doctors and specialists suggest that some of the symptoms were in my head or I was having anxiety. So I know what these things feel like,” Magane says.
Although demanding to be seen and heard has always come naturally to Magane, she stresses being vocal and persistent as some of the most important weapons for anyone battling lupus.
“If your doctors aren’t listening to you then you need to find a new doctor. It’s okay to look for someone who listens to you,” Magane says. “Your doctors may have gone to medical school but you’ve lived in your body your whole life and know it best.”