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Thirty-One Faces of Hope: Dion Langley

The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions. 


Dion Langley

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“Mr. Langley, you have lupus,” are words I will never forget. After two years of being extremely weak with chronic fatigue, loss of appetite with extreme weight loss and chest pains like I’m having a heart attack, they finally figured it out. It took severe pain, an ER visit which turned into a two week hospital stay, and a plethora of tests for the doctors to come in and explain I have lupus. The year 2010 truly changed my entire life. 

I didn’t know what to think as the only information I was told was that lupus is a disease only females have. Now I’m questioning myself, my masculinity and my lifespan as I felt was just given a death sentence. “How could I even get a female’s disease?” I definitely didn’t want to tell anyone as I was embarrassed and didn’t know much about it myself. I kept it to myself for 3 years because I was afraid of the judgement and public misperception that I am a weak male because I was diagnosed with lupus.

Before being diagnosed, I watched both my mother and grandmother deal with complications from lupus, so I have always been passionate about finding a cure because of the impact it had on my family. I’ve seen multiple aspects of this disease. My grandmother’s lupus went into complete remission but my mother succumbed to her battle with lupus. Even after watching them go through their individual battles with lupus, nothing prepared me physically, mentally or emotionally for my own battle. 

After being diagnosed with SLE, I tried my best to continue working and doing things for my family but my health just wouldn’t let me. I was taking all types of medications while being in and out of the hospital for periods at a time. It really took a toll on me. I realized that I would never be able to be the same person as before. 

I suffer from chronic pain in my chest and heart area, and I can’t count how many times I've been to the ER since 2012 dealing with it. Lupus has affected my joints, skin and circulatory system. Also being a drummer takes a toll on my body, because I find myself struggling trying to keep myself energized throughout the concerts, and I have to pace myself so I wont get tired as fast. 

Many nights I can’t sleep. Then there are times when I just sleep all day and night because I feel so tired, only to get up and feel like I haven't slept in 3 or 4 days. My body stays sore in the shoulder, lower back and chest area. I suffer from shortness of breath and I haven't been able to be active with my kids like I was before being diagnosed with lupus. I suffer badly from constant chest pain and an unexplained rapid or irregular heartbeat due to inflammation around the heart. Overtime I also developed Pericarditis as a side effect of me being diagnosed with lupus. So each day is a challenge though I’m working hard to stay healthy and motivated during this journey.  

In early 2018 (shortly after my lupus surgery), I began wearing the #BeatLupus t-shirts as motivation to myself. Since I’m a drummer, I came up with the slogan #BeatLupus because it really fits who I am as a musician and lupus warrior. I started posting pictures on my social media pages as encouragement to all living with lupus, especially men. I instantly started receiving so much positive feedback and I was able to connect with so many different people from all over. With that in mind, I formed the #BeatLupus Brand and #BeatLupus organization as my way of giving back to others who suffer from this deadly disease. 

A huge misconception of lupus is that because some who suffer from it look well on the outside that we're ok, but no one can feel the pain that we are dealing with on the inside. I want to build a stronger family support system within the lupus community by educating and equipping people with as much knowledge as possible. A strong support system is very beneficial to the overall health and quality of life for a person living with an autoimmune disease, so I encourage caregivers and lupus warriors to join weekly support groups like the ones available with the Georgia Chapter of the Lupus Foundation of America.

I’m glad to know that my efforts have already made a positive impact due to the wonderful emails I receive! I’m very blessed and humbled, and I take lupus advocacy very seriously. Before I was diagnosed with lupus my goal was to be the best drummer in the world, but God had a different plan for me. I’m far from the best drummer in the world, but I’m still blessed to be able to do what I love. So as I always tell people, “I’M DRUMMING TO A DIFFERENT BEAT“  and that’s to BEAT LUPUS!! 

-Dion Langley