Rachel Goins, a former D.C. resident and current ambassador with the Lupus Foundation of America, calls the disease a “cruel mystery” because it is so often misdiagnosed.
Lupus Awareness Month, which happens every May, aims to raise awareness about the chronic autoimmune disease impacting 1.5 million Americans and raise money for research.
Rachel Goins, a former D.C. resident and current ambassador with the Lupus Foundation of America, calls the disease a “cruel mystery” because it is so often misdiagnosed.
She experienced her first flare up in the fall of 2015, but wasn’t diagnosed until nearly two years later — after seeing a number of doctors.
“Lupus is as much of a mental hurdle as it is physical,” Goins said. “I think that fear — ‘I don’t know what’s going on with my body. I know that something’s wrong, but I don’t know what it is.’ — I think that’s really hard to deal with.”
Lupus most commonly affects the skin, joints and internal organs, such as the kidneys and heart. Symptoms include extreme fatigue, inflammation, headaches and sensitivity to sunlight.
Many people with lupus also experience hair loss, mouth ulcers and a butterfly-shaped rash on their cheeks and nose.
“I think one of the biggest misconceptions about lupus is that just because someone might not look sick on the outside, doesn’t mean that they are not in pain or feeling extremely fatigued,” Goins said. “Lupus is known as the ‘invisible disease’ to some, and that really just means that when you see someone that has lupus, they may look perfectly healthy, when really they’re suffering.”
While there’s no cure for lupus, receiving the right treatment plan from a rheumatologist can help control the symptoms. The average financial impact of lupus can be up to $50,000 annually, so part of the Lupus Foundation’s mission is to expand access to treatments and reduce out-of-pocket costs.
“As prevalent as lupus is, there’s a long way to go,” Goins said. “We’re hoping that through advocacy and working with members of Congress to gain more funding and research opportunities, that we can further the progress and work towards a lupus-free world,” Goins said.
While lupus knows no racial or ethnic boundaries, women develop the disease more often than men, and lupus is three-times more common in Black women than white, non-Hispanic identifying women.
Goins said she wants people who think they have lupus or are newly diagnosed with it to know they are stronger than the disease.
“I’ve been able to use lupus as a driving force behind everything that I do,” Goins said. “And it ultimately has become my motivator. And so to me, being a warrior, I think just means embracing what obstacles and challenges come your way and turning that into a positive.”
The Lupus Foundation of America will host its Walk to End Lupus Now on the National Mall on Sept. 30.