Living with lupus can come with its share of ups and downs. Lupus is a chronic inflammatory disease that causes the immune system to attack its own organs and tissues. Symptoms range from mild to severe. Lupus may give rise to seasons of flares and remission, but many people living with lupus have found a way to thrive despite its unpredictability.
Instead of allowing the disease to push the pause button on life, these men and women are boldly stepping out to show lupus who’s boss. From weightlifters and fashion models to CrossFit trainers and authors, these real-life heroes are sure to inspire and motivate anyone living with a chronic illness.
Benzik was diagnosed with lupus at the age of 12. She shares that it was her mother’s support that helped her get through the initial fear of having an incurable disease. Hand in hand, they vowed to fight. This fight included an intense focus on clean eating, extra rest, weight training, and low-impact exercises. The effects weren’t instant, but Benzik trusted the process. Over time, she felt improvements in her pain, mobility, and mindset.
While she still lives with fatigue, brain fog, Raynaud’s phenomenon, and an occasional rash, she refuses to let lupus set limitations on her life. Today, Benzik is a popular CrossFit coach and athlete who competed at the CrossFit Games Regionals in May 2017.
Elijah Samaroo is just 21 years old and already leaving quite a mark on the world around him. With an intense passion for graphic, web, and clothing design that grew during his teenage years, Samaroo started his own clothing company, SAFii, after high school.
Though diagnosed with Class IV lupus nephritis and currently living with end-stage renal disease, he lives with a positive outlook on life. He’s missed out on special moments because of lupus, like segments of high school and homecoming. But Samaroo says he can still find joy each day, whether working with celebrities in California or designing on his laptop while in the hospital.
Galgano was diagnosed with lupus in 2014. She recalls that year as the “biggest battle of her life.” After coming out on the winning side, she slowly returned to her fitness roots and volunteered at the 2015 New Jersey Spartan Beast race. An overwhelming desire to run overtook her, and though not prepared, she jumped in. Almost seven hours later, Galgano successfully completed the 13-mile race. She crossed the finish line bleeding, wet, covered in mud, and dealing with Raynaud’s in her toes and fingers. It was in that moment she knew she’d never let lupus stand in her way.
Since then, she’s completed over 60 races and became a CrossFit Level 1 trainer. She also works as a marketing strategist. Galgano enjoys connecting with other men and women living with lupus.
Wexler is a pediatric nurse at The Children’s Hospital of Philadelphia. She wanted to use her career knowledge and personal experience with lupus to help others after being diagnosed in 2008. And so, the cheeky, quick-witted, and raw Luck Fupus blog was born. As a writer and public speaker on the topic, MarlaJan wants men and women with lupus to know they can still laugh and find humor in life despite the condition.
Though her nursing career has been impacted in some ways because of the disease, Wexler’s upbeat attitude is sure to brighten your day.
Enjoy a few laughs and be inspired at LuckFupus.com
After being diagnosed with lupus in 1993, Hetlena J. H. Johnson clung to her faith and the perspective that a disease didn’t have to prevent her from living a great life. Today, she’s an author, TEDx speaker, founder of The Lupus Liar, and so much more.
Although she lives with daily lupus symptoms like fatigue and pain, she shares how living in the present and not focusing on the “what ifs” have helped her thrive.
Lydia Romero-Johnson experienced rashes, pain, and fatigue since an early age. But it wasn’t until after a complicated pregnancy in 2002 that she was diagnosed with lupus. Being a registered nurse, she understood the medical aspects of the disease but wanted to dig deeper into the psychological, emotional, and spiritual side of having a chronic illness.
This journey led Romero-Johnson to the certified health coach program at the Institute for Integrative Nutrition. Today, in addition to nursing, Romero-Johnson provides holistic coaching to women seeking a happier and healthier life. Helping others, Romero-Johnson shares, has been “life transforming.” It’s brought her from feeling limited by a diagnosis to now feeling limitless about her future.
Complications from lupus forced model Aida Patricia off the runway early in her career, but she was quick to combine her love of fashion with her desire to educate others about the disease. The result was Runway for a Cure, a mega-fashion show event that happens every fall in Rhode Island at the Providence Biltmore Hotel.
The show is focused on disease awareness. It’s described by Patricia as “a night for men and women living with lupus to feel beautiful and forget the pain for a few hours.” When not living and breathing fashion, Patricia works for a U.S. senator in Rhode Island and is the New England lupus ambassador for The Lupus Foundation New England. While she feels blessed to still be able to work, complications from lupus have made it challenging.
While Hinkel hasn’t been diagnosed with lupus, he has been “living” with lupus his entire life. He grew up taking care of his father, who’d been diagnosed with the disease in his early 20s. Hinkel was left frustrated when people would comment about lupus being a woman’s disease (a common misconception) and by the lack of awareness surrounding the illness.
After his father passed away, Hinkel wanted to use his natural strength, health, and desire to increase the visibility of lupus — so he created Lifting Awareness. In addition to creating awareness videos by bench-pressing as much as 405 pounds, he regularly meets with political and government leaders as well as NFL alumni to educate others about the illness.
Living with a chronic illness of any kind presents its challenges for the day to day. But with determination and a positive outlook, it’s true that anything is possible. These eight success stories are living proof of that.
Marisa Zeppieri is a health and food journalist, chef, author, and founder of LupusChick.com and LupusChick 501c3. She resides in New York with her husband and rescued rat terrier. Find her on Facebook and follow her on Instagram @LupusChickOfficial.