Lupus Awareness Month means many things to each person impacted by this cruel disease. For most, it is a time to spread general awareness, raise funds for research and gives the Lupus community another opportunity to join forces in fighting for a cure.
I have had the pleasure of meeting different warriors who’s personal meaning of Lupus Awareness Month has not quite been fully heard. It is my desire to ensure ALL voices are heard and heard loudly!
When it comes to the Lupus Community the female presence outnumbers the male; however, both female and males alike are fighting this debilitating disease daily.
It is my pleasure to introduce to you my Lupus Brother Dion Langley an Independent Drummer, Lupus Advocate and CEO and President #BeatLupus.
Here is Dion’s story…
“In 2010 I was diagnosed with Systemic Lupus and for 3 years I struggled with having it and didn’t share it with anyone. I wasn’t mentally prepared to face the things we as men feel can result in our masculinity being questioned.
How did he end up with a women’s disease?
I didn’t want to be seen as weak or less than a man because one of the biggest misconceptions about lupus is that it’s a woman’s disease.
When I was finally able to open up and share with my family about having Lupus, the support I received was an eye-opening experience and helped me realize that there are so many people struggling the way I was. They too could be feeling like they are alone in this fight and so it became my purpose to share as much lupus information as I possibly could. I want to help people have a much better understanding of what lupus really is.
I didn’t want to limit myself to just my community though. So with some deep prayer and motivation, I decided to use something that I love, my career, as a professional drummer as a nationwide avenue to promote something that I have always been passionate about.”
Wow! Right?! I am unsure of how many of us really understood this point of view even as Lupus Warriors ourselves. I then asked Dion why was spreading Lupus awareness literally 24/7 in his everyday life and occupation so important?
He replied, “While doing laundry a lady walks up to me and asked ‘Did she beat it?’ She was making reference to the #Beatlupus t-shirt I was wearing. I said I’m sorry, she repeats, ‘Did she beat it?’ and points to my shirt. I said ma’am I have lupus. Her mouth opened wide with disbelief and finally she said, ‘I didn’t know that men could get lupus. I thought only women got it.’ “
He went on, “It wasn’t my first time hearing or seeing this reaction to me telling someone that as a male, ‘Yes I have lupus.’ Many are shocked to find out that men too are diagnosed with lupus. They know very little about the hardships and complications that come with being a male with lupus. Some know very little about the disease past the name and even less about the struggles that we as men deal with. Some of those struggles include the medications not being strong enough to sustain us. We take the same medication as women with lupus so there is no difference in the treatment, but our reaction to the medication is completely different due to it simply not being strong enough. As a result of this and the many other misconceptions about lupus I advocate as much as possible to bring awareness to this disease. Although all of our missions should be the same and is to find a cure for this disease, I would like to shed some light on the men who are often overlooked or not treated because we are not being tested for what is considered a woman’s disease.”
I then asked why he chose #BeatLupus as his slogan and apparel line.
He responded. “I don’t wear #Beatlupus apparel as a fashion statement. It is a daily affirmation for me and my brothers living with lupus. It’s an everyday mission for me to show the world that I have Lupus; Lupus doesn’t have me and I will defeat this disease. It is my mission to advocate for those brothers who have yet to find their voice to speak out about our struggle with Lupus.”
In closing, I asked Dion what Lupus Awareness Month meant to him.
He stated, “Lupus awareness month for me is a time for us to let the world know that Lupus is real and it affects more people than most are aware of and just because lupus is often overlooked, people need to acknowledge it is a REAL disease. It can be FATAL. It deserves recognition and most importantly that we desperately NEED a CURE.”
I could not agree more! I want to publicly thank Dion for his time to share such great knowledge with me and #teamangelslupusjourney wishes him well on his every endeavor as we cheer him on.
Check out Dion Langley on social media and be sure to visit his website https://drum4lupus.org/beatlupus-apparel
No portion of this article may be duplicated in writing or in any other recorded format without permission.