Those who suffer from lupus and fibromyalgia already live daily with their invisible diseases ― often finding themselves having to explain that just because they don’t look sick, they really are.
So when the coronavirus pandemic threatened to silence an annual walk to bring awareness to the two diseases and raise funds for a Hampton Roads, Va. lupus/fibromyalgia support organization, organizers decided to take the walk online.
It’s a similar move to what many nonprofits across the country are doing after the novel coronavirus put everything on pause. Amid ongoing uncertainty about when everything will open back up, fundraisers are being postponed, cancelled or, in the case of the Butterfly Walk, going virtual.
We’re not going to let ‘Rona stop us from achieving our mission in being there to help,” says Chastity Corbett, a lupus survivor who founded the Social Butterflies Foundation in 2018.
Walk Allows the Foundation to Support Survivors
The foundation, based in Newport News, Va., was already deep into planning its second annual walk when the pandemic struck. The walk is the major fundraiser for the foundation as well as an outlet for survivors of the two diseases. Social Butterflies offers assistance to survivors including support groups, health fairs, medical bill assistance and caregiver help. The foundation also provides wigs to survivors who lose their hair from treatment.
By turning the walk into a virtual event, survivors will be protected from any possible exposure to COVID-19, which can be more harmful to those with underlying conditions.
Lupus is a chronic autoimmune disease that can cause inflammation, pain and damage in various parts of the body ― basically, it causes the body’s immune system to attack itself. Fibromyalgia, meanwhile, is a long-misunderstood illness associated with chronic pain and other issues such as fatigue and sleep disturbances. An estimated 195,000 people in Virginia live with the conditions, Corbett says.
The Lupus Foundation estimates that 1.5 million Americans have some form of lupus. About 10 million people in the U.S. are believed to have fibromyalgia, according to the National Fibromyalgia and Chronic Pain Association. Both illnesses primarily affect women.
For those who suffer from the conditions, “we may look fine from the outside, but inside our bodies are going through a war,” Corbett says. Neither of the diseases have a cure.
Butterflies as a Symbol of Togetherness
One of lupus’s trademarks is often a butterfly-shaped rash on the face ― that’s where the foundation gets its name. For Corbett, the name also symbolizes the fact that “butterflies don’t let each other fly alone.”
Corbett, 46, a mother of three, was first diagnosed with lupus in 2005 after developing a persistent rash on her arm. Since then, she’s gone through chemotherapy treatment three times, endured numerous hospitalizations and temporarily lost her sight in one eye from medication. She’s been in remission several times, but the lupus always rears its head.
It’s been rough, but at the same time it makes me stronger and makes me fight harder, not just for myself but for other survivors,” Corbett says. “I see others who are much worse off than I am.”
A former records clerk for the Newport News Sheriff’s Office, Corbett started Social Butterflies to make sure that local survivors of the illnesses were getting the help they badly needed, which she says wasn’t always happening from national foundations.
The Butterfly Walk, held in Newport News and at James Madison University, supports the foundation’s programs and helps fund scholarships for young people. Although last year the two walks were at different times, this year they will occur together as the virtual walk. Last year about 500 people filled Todd Stadium in Newport News for the walk.
How to Participate
Participants are asked to register online and walk anywhere, at any time, on June 20th. The $35 registration, if in by June 5th, comes with a signature purple walk T-shirt and a medal, which will be shipped. Walkers are encouraged to take photos and post them on social media with the hashtag #virtualbutterflywalk.
Chastity Corbett, a lupus survivor from Newport News, Va., started the Social Butterflies Foundation in 2018 to help support those with lupus and fibromyalgia.
The foundation is still seeking sponsors for the event. Cocoa Brown, an actress and comedienne who hails from Hampton Roads, will serve as the walk’s grand marshal.
The foundation also plans to hold a “Rock the Block” event at the Peninsula Town Center in Hampton on June 27th from 5-9 p.m. The event includes a few concert, activities and a vendor fair. The foundation will also present its scholarship recipients and recognize its youth honoree.
We want to help as many people as possible,” Corbett says. “The people living with this really need the support.”
Anyone wishing to join the 2020 Butterfly Walk or donation to the foundation can visit www.butterflywalkforlupusandfibro.org. Register by June 5th to get a T-shirt and medal in time for the June 20th walk.