{"id":15772,"date":"2019-03-05T15:37:43","date_gmt":"2019-03-05T15:37:43","guid":{"rendered":"https:\/\/www.ucf.edu\/pegasus\/?p=15772&post_type=story"},"modified":"2021-06-22T19:16:26","modified_gmt":"2021-06-22T19:16:26","slug":"the-advocate","status":"publish","type":"story","link":"https:\/\/www.ucf.edu\/pegasus\/the-advocate\/","title":{"rendered":"The Advocate"},"content":{"rendered":"

Spring 2019 | By\u00a0Nicole Dudenhoefer ’17<\/strong><\/em><\/p>\n

[lead]Azmia Magane \u201907 \u201909MSW<\/strong>\u2019s grandfather often described her as a bulldog with a piece of meat. \u201cOnce I get ahold of something, that\u2019s it. It\u2019s happening,\u201d she says. \u201cI\u2019m not letting it go.\u201d[\/lead]<\/p>\n

That fighting spirit has driven the psychology<\/a> and social work<\/a> alumna to make a lot of things happen over the past three years. Just take a look at her resume. She\u2019s 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\u00a0Vogue<\/em> and The Source<\/em>.<\/p>\n

She currently serves as an editor at\u00a0MuslimGirl.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\u2019s made an impact on a legislative level by working with officials to get Muslim Women\u2019s Day recognized in Orlando and the state of Florida.<\/p>\n

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\u2019 visits, and having seven lymph nodes and a mass removed from her chest.<\/p>\n

[callout background=”rgba(255, 202, 6, .5)” content_align=”left” affix=”false” css_class=””][blockquote source=”” cite=”” color=”#00000″ css_class=””]\u201cI 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.\u201d[\/blockquote][\/callout]<\/p>\n

But Magane\u2019s 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\u00a0volunteers to help raise awareness and effect change for those living with lupus.<\/p>\n

\u201cI had such a horrible experience getting diagnosed that it wasn\u2019t something I wanted anybody else to go through. So I decided to apply [for the volunteer program,]\u201d Magane says. \u201cI 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.\u201d<\/p>\n

It\u2019s 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.<\/p>\n

[callout background=”rgba(255, 202, 6, .5)” content_align=”left” affix=”false” css_class=””][blockquote source=”” cite=”” color=”#00000″ css_class=””]\u201c[Lupus is] a very difficult disease that even medical practitioners don\u2019t understand.\u201d[\/blockquote][\/callout]<\/p>\n

\u201cSometimes that can make people look like they\u2019re faking it, but that\u2019s not the case at all. It\u2019s just a very difficult disease that even medical practitioners don\u2019t understand. It doesn\u2019t have a cure, they don\u2019t know what causes it exactly and there are very limited treatments for it,\u201d Magane says.<\/p>\n

There is only one FDA-approved drug that is specifically targeted for lupus \u2014 Benlysta, which was approved in 2011. The treatment must be administered intravenously and doesn\u2019t work for everyone. It usually takes many years and assessments from several different specialists before someone can receive the proper diagnosis and treatment.<\/p>\n

\u201cUntil you\u2019re affected by this it is very hard for people to understand,\u201d Magane says. \u201c[Most people don\u2019t] know what it\u2019s like to end up in the hospital every month for a week at a time. It\u2019s hard to explain that to my other friends and family. They see it, but they don\u2019t see it all the way.\u201d<\/p>\n

Magane\u2019s LFA ambassador position is giving her the opportunity to help others see this \u201csilent illness.\u201d But her main goal is developing a patient advocacy program that helps others learn how to navigate the diagnostic process, work with healthcare professionals<\/a> and deal with insurance companies \u2014 often taxing work for someone managing a physically, mentally and emotionally draining illness.<\/p>\n

[callout background=”rgba(255, 202, 6, .5)” content_align=”left” affix=”false” css_class=””][blockquote source=”” cite=”” color=”#00000″ css_class=””]\u201cYour doctors may have gone to medical school but you\u2019ve lived in your body your whole life and know it best.\u201d[\/blockquote][\/callout]<\/p>\n

\u201cThese are things I\u2019ve personally dealt with. I\u2019ve had a $48,000 hospital bill sent to me before. Last year, I owed $136,000 in out-of-pocket medical expenses, after insurance,\u201d Magane says. \u201cBefore 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,\u201d Magane says.<\/p>\n

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.<\/p>\n

\u201cIf your doctors aren\u2019t listening to you then you need to find a new doctor. It\u2019s okay to look for someone who listens to you,\u201d Magane says. \u201cYour doctors may have gone to medical school but you\u2019ve lived in your body your whole life and know it best.\u201d<\/p>\n","protected":false},"featured_media":16611,"template":"","categories":[],"tags":[1381],"class_list":["post-15772","story","type-story","status-publish","has-post-thumbnail","hentry","tag-college-of-health-professions-and-sciences","issues-1348","issues-spring-2019"],"yoast_head":"\nAzmia Magane: Advocate for Muslim Women & Lupus Patients<\/title>\n<meta name=\"description\" content=\"Azmia Magane fights for representation. 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