While 90% of people with lupus are women, the 10% of men also impacted by lupus face the same roller-coaster experience and often struggle more to find community.
Like too many men, Emmitt Henderson III faced his lupus diagnosis alone. But now, he is changing that for thousands of men around the world..
Braving the Challenge Ahead
Emmitt was diagnosed with systemic lupus erythematosus at just 25 – after years of misdiagnosis that caused repeated fevers, skin rashes. It took a three-month hospital stay and multiple specialists before a rheumatologist finally determined kidney failure due to lupus nephritis.
“Having never heard of lupus, I asked for something to read and received a pamphlet with illustrations of a woman’s anatomy,” Emmitt recalls. “I told myself, ‘I don’t think I can learn from this.’ As a male with lupus, I was ashamed of having what the doctor called a woman’s disease. So, I hid it, especially at work where I was excelling as a manager.”
No one suspected he had a chronic illness, even amid sudden flares, pain, and multiple organ failures – but the road ahead was not easy. He’s since been diagnosed with many other autoimmune diseases – including Sjogren’s, rheumatoid arthritis, and fibromyalgia – and has been on home dialysis waiting for a second kidney transplant for nearly five years. But he presses on.
When looking back at the time of his diagnosis, he didn’t have anywhere to turn. There was no internet, no support groups near him, and no one he felt he could talk to. He was determined to change that.
Providing Others with Resources He Never Had
Emmitt saw an opportunity to provide other men with lupus with the resources he didn’t have. He wanted to raise awareness of the disease and its impact on men, promote clinical trial participation, advocate to Congress for lupus research funding, and – most importantly – provide direct support and a safe place for men to share their stories and learn from one another.
Emmitt started by telling his own story on social media. He soon saw the power it held.
“I didn’t realize I had a story until I told my story,” He explained. Phone calls, emails, and thousands of social media responses poured in. Emmitt has inspired so many, regularly speaking at events such as the Lupus Research Alliance San Diego Walk with Us to Cure Lupus.
He started his own organization called Male Lupus Warrior, offering a monthly online support group for men with lupus. His work has won acclaim among the global lupus community and awards from multiple organizations including the Gibson Lupus Autoimmune Resource Center, California Lupus Foundation, and Social Health Network.
While fostering this support, Emmitt also provides the educational resources he had wished for earlier in his journey, encouraging people to visit the Lupus Research Alliance website to learn more and get involved.
Continuing to be Inspired
In doing this work, Emmitt has been inspired “seeing other men with lupus stand up, to start posting about their experiences on social media, to start talking about it.” All of this had let Emmitt reach heights he never thought possible – helping educate men in Africa about lupus, visiting the pyramids of Egypt, and literally climbing to the top of Mount Kilimanjaro. Nothing holds him back — his portable dialysis machine goes with him everywhere, so he can continue to travel and speak around the world. At every stop, he’s always amazed at the people he meets and the community he’s able to foster. Emmitt hopes his own positive attitude can encourage others: “I don’t live with lupus; lupus lives with me on my terms. I just keep going and I think that attitude has helped me tremendously.”
For those who might be facing a new lupus diagnosis, he shares:
- Educate yourself on what lupus is and what it can do. Visit LupusResearch.org to learn more about the disease and the research being done.
- Prepare yourself and your body for how lupus could affect you in the future. Start eating right, working out, and building your strength.
- Learn about and consider joining a clinical trial – noting “it literally saved my life and might help you too.”
- Find time to recharge – “For me it’s fishing. If I catch one, it’s a good day, and if I don’t catch one, it’s a good day simply enjoying nature.
Emmitt’s greatest motivation is to encourage other men facing lupus to know they are not alone and they can live their best life.
“I tell everyone I would never have gotten to the place I am today without the pain I’ve been through,” he reflects. “I’ve turned my pain into power, with power came progress, and with progress came results.”
Tags: California Lupus Foundation, Emmitt Henderson, Gibson Lupus Autoimmune Resource Center, San Diego Walk with Us to Cure Lupus, Social Health Network