Advocates for Sickle Cell Disease Hope to Enlighten the Public
September events seek to raise awareness about a disease affecting 100,000 in US
For most of her life, 38-year-old DeeAnn Edwards Mann has been quiet about having sickle cell disease (SCD). She has tried to remain anonymous on sickle cell-related forums and social media conversations, and doesn’t talk about it much with her friends.
In some cases, she can even hide her condition and its symptoms. In other cases, it’s more obvious. She falls behind when walking with friends and needs to take breaks.
But lately, that’s been changing. Slowly but surely, she’s been speaking up about her illness.
“Being able to have people around you that, even though you’re not necessarily sharing how you feel, they’re empathetic that, ‘oh, I know, sometimes she just doesn’t feel well, so I’m just going to try to make things easier for her,’ ” Edwards Mann, who grew up in the Caribbean and lives in Virginia as a medical coder, said in an interview with Sickle Cell Disease News. “I’m realizing that if we don’t speak up and we don’t speak out, then people just won’t see [SCD].”
Being an advocate means choosing to be ‘a voice for the voiceless’
Awareness is personal for Edwards Mann and for the 100,000 other people in the U.S. with SCD, including her younger sister Jaclyn Edwards.
While Edwards Mann doesn’t expect anyone to fully understand what she’s gone through — recurrent hospitalizations, two pulmonary embolisms, extreme fatigue, and hospital staff believing she is engaging in “drug-seeking” behavior — she hopes that with more awareness and education, her peers might be able to better understand her needs.
DeeAnn Edwards Mann has recently made a decision to be more active in the sickle cell disease community. (Courtesy of DeeAnn Edwards Mann)
This September’s National Sickle Cell Disease Awareness Month seeks to highlight the scale of the disease while bringing communities together to help patients, families, and friends across generations who are affected by the disease.
“All the work that we’re doing now, isn’t necessarily for our generation. It’s so that the next generation doesn’t have to encounter some of the setbacks, some of the hurdles that as patients we have to go through,” said Wunmi Bakare, a sickle cell patient and public relations professional. “In the African American community, we say we are walking on the backs of our ancestors, I think that … reasoning needs to be applied with sickle cell.”
Bakare has been advocating for her SCD community since 2017 when she developed a serious mycobacterium avium complex infection in her home country of Nigeria. The infection, which nearly took her life, usually kills patients after six months. In facing death head-on, Bakare realized she could help the SCD community in its pursuit of a universal and affordable cure while using her background in PR to raise awareness.
“When you choose to be an advocate, you choose to be a voice for the voiceless,” Bakare, 34, who runs her own PR firm and lives in Seattle, said. She recently celebrated her third year post-haploidentical stem cell transplant.
Wunmi Bakare, originally from Nigeria, has been advocating for the sickle cell disease community since 2017. (Photo by Wunmi Bakare)
This September, Bakare will post her weekly YouTube series called Diary of a Sickle Cell Prodigy where she interviews patients and others about their personal stories with sickle cell disease. She also plans to write an editorial for Essence magazine, attend an interview with her local ABC station, and participate in a series of videos on curative therapies for the Heart, Lung, and Blood Institute, and the Human Genome Research Institute of the National Institutes of Health (NIH). It’s important to share her stories as well as others’ so that the public learns about the people behind the disease, Bakare said.
Sickle cell awareness events are planned throughout September
As part of Awareness Month, national nonprofits will host a number of events throughout September.
Sick Cells, which focuses on telling the stories of those with the disease to help drive policy changes, will host its Coverage for SCD Summit. The Aug. 31 virtual meeting will discuss why SCD is costly, challenges to patient access, and managed care plans.
Meanwhile, the Sickle Cell Disease Coalition (SCDC), which represents more than 100 SCD national and international nonprofits, has planned its annual summit for Sept. 9.
“The SCDC Annual Summit enables SCDC members to gather, celebrate, and strategically plan for collective action over the years ahead,” Tessa Youngner, the coalition’s programs specialist, said.
SCDC will offer its National Sickle Cell Awareness Month 2022 Archive webpage and will include resources about how to draw attention to the disease and related campaigns that can be supported.
Sickle Cell Matters 2022 is the theme for this year’s National Sickle Cell Awareness Month at the Sickle Cell Disease Association of America (SCDAA). Those who want to shed some light about the condition can download and print flyers that include stats about SCD and tips to stay healthy with the disease.
Global Blood Therapeutics and SCDAA will co-host the 11th Annual Sickle Cell Disease Therapeutics Conference on Sept. 14 at 9 a.m. ET. The conference will cover the latest advances in treating the condition.
The association will also host three “Twitter parties” in September. The Q&A Twitter threads will kick off Sept. 19 from 12:30–1:30 p.m. EST. The first event will focus on advocacy and awareness. The next event, on Sept. 21, will cover mental health, and the final event on Sept. 23 will look at pharmaceutical initiatives and finding a universal treatment.
Beyond those virtual events, the association asks people to continue to work to dispel myths about SCD, lighting public spaces and buildings red, and registering for a online blood drive.
Meanwhile, area organizations will help raise awareness through walks and runs, blood drives, and other SCD-related events.
The California-based Cayenne Wellness organization will host its 14th Sickle Cell Disease Educational Summit, Sept. 15–17, in San Diego. The theme for this year’s seminar is “Embracing Possibilities” and listeners will hear about the latest treatments for sickle cell, racism and SCD, and national policy updates. The summit’s first day will end with a celebration-of-life ceremony.
The small Georgia nonprofit RedMoon Project will release images of patients from a photo shoot as part of an effort to put a human face to sickle cell disease.
“I wanted to highlight the faces of SCD looking more outside and not always being sick,” Cory Lewis, founder of RedMoon, said.
The NIH has also made available a number of resources to raise awareness about SCD and improve care for those affected by the disease. Patient handouts that focus on healthy living, managing pain, and hydroxyurea are available on its website.
Patients like Bakare and Edwards Mann are hopeful that all of these initiatives and events can educate those who don’t know about sickle cell.
“I want to be able to walk on the street and say, ‘I have sickle cell disease’ and not have someone look at me and say, ‘I have never heard that in my life,’ ” Bakare said.
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