Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker, and fierce advocate. Jenn has unique experience..
Save the Date!
One of the most exciting parts about being a patient advocate is the chance to connect with fellow advocates. MarlaJan Wexler, a well-known lupus advocate and superhero, was kind enough to virtually sit down with us to share her story.
In the beginning….
Though lupus is often called an invisible disease, 39 year old pediatric cardiology nurse MarlaJan Wexler is an incredibly visible Lupus advocate.
She was diagnosed with Lupus in 2008 at the age of 27 though she suspects her symptoms began much earlier. She went to her PCP for occasional joint pain, rashes and fatigue, but chalked them up to being a hard-charging nursing student who also worked full-time and partied a bit too much (hello, early twenties!); didn’t eat healthy; or sleep enough.
It wasn’t until after MarlaJan’s honeymoon that it became apparent too much sun and fun had kicked off what turned out to be her first Lupus flare. UV light can trigger disease activity, and she became very sick mere weeks after returning from her honeymoon.
“My body literally rejected my marriage,” MarlaJan laughs as she describes her divorce foreshadowing the future. Unfortunately, after this initial flare and eventually being diagnosed, she realized Lupus was a real disease and she needed to take it seriously.
Becoming an advocate
The first time MarlaJan felt a sense of connection to another patient with Lupus was when a woman read her blog online and reached out from across the ocean. She had decided to put herself out there in hopes people would read her story.
“Everything I was putting out there was how she felt and she just thanked me. Even if that was just one person, it made a difference and made her feel like she wasn’t the only person facing this.“ MarlaJan says after this, everything snowballed. She created various social media pages and founded her advocacy organization, Luck Fupus to make sure there was reputable data from reliable sources for those with Lupus
In 2014, MarlaJan won the WEGO Health Hilarious Health Advocate award, ultimately finding her place on stage sharing her story and in the broader patient community. “I felt completely isolated my whole life…and then (through this award process) I’ve connected with so many people with a smorgasbord of various diseases.” She went on to say, "As much as being sick sucks, it took me down this path that I never knew existed and that I never would have thought for myself."
Now that MarlaJan is firmly entrenched in the advocacy space, she uses her platform to connect with other patients. She’s especially passionate about the need for consideration of women's reproductive choices before starting on a therapy that may limit the ability to have children safely in the future. When a patient is first diagnosed, she recommends all patients prescribed immunosuppressive therapy talk with their care team about their fertility risks and options. Similarly, MarlaJan is passionate about ensuring that all patients have access to relevant and reputable sources of medical information so they can make better informed choices about their care.
MarlaJan’s Call to Action
In today's climate where several Lupus medications are being viewed as potential therapies for COVID, MarlaJan knows all too well that some patients are dealing with an additional, unforeseen complication: limited access to the lifesaving medications they so often depend upon. “Regardless of the fact that hydroxychloroquine has been found to not be beneficial in the treatment of COVID, many [Lupus patients] people are still having so much trouble getting their medications.”
Access issues aside, MarlaJan also wants the broader community to know that more voices are needed in the Lupus community. “There are 1.5 million Americans living with it [Lupus] and over 5 million people in the world living with it. It’s not a rare disease. We need more voices.”
At this point in the interview, one of MarlaJan’s two cats, Professor Puddin’ Pop, made an unexpected cameo. We would be remiss if we neglected to mention the earlier cameo by MarlaJan’s other cat, Dunkin Nonuts, a charming and spirited tabby.