For most of her life, 38-year-old DeeAnn Edwards Mann has been silent about sickle cell disease (SCD). She has tried to remain anonymous on sickle-related forums and social media chats and doesn’t talk about it much with her friends.
In some cases, it can even hide its condition and its symptoms. In other cases, it is more obvious. She falls behind when walking with friends and has to take breaks.
But recently, that has changed. Slowly but surely, she has been talking about her illness.
“Being able to have people around you that, even though you’re not necessarily sharing what you’re feeling, they’re empathetic that, ‘oh, you know, sometimes she just doesn’t feel right, so I’m just going to try to you make things easier for him,” said Edwards Mann, who grew up in the Caribbean and lives in Virginia as a medical coder, in an interview with News about sickle cell disease. “I’m realizing that if we don’t speak up and don’t speak up, then people just won’t see [SCD].”
Being a lawyer means choosing to be ‘a voice for the voiceless’
The awareness is personal to Edwards Mann and the 100,000 other people in the US with SCD, including her younger sister Jaclyn Edwards.
While Edwards Mann doesn’t expect anyone to fully understand what she’s been through — repeated hospitalizations, two pulmonary embolisms, extreme fatigue and hospital staff who believe she’s engaging in “drug-seeking” behavior — she hopes that more with a lot of awareness and education, her peers may be able to better understand her needs.
DeeAnn Edwards Mann 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 aims to highlight the extent of the disease by bringing communities together to help patients, families and friends across generations who have been affected by the disease.
“All the work we are doing now is not necessarily for our generation. It is so that the next generation does not have to face some of the hurdles, some of the hurdles that we as patients have to go through,” said Wunmi Bakare, a sickle cell patient and public relations professional. “In the African-American community, we say we’re walking on the backs of our ancestors, I think … reasoning should be applied with sickle cell.”
Bakare has advocated for her SCD community since 2017 when she developed a serious mycobacterium avium complex infection in her home country of Nigeria. The infection, which almost took his life, usually kills patients after six months. Facing death head-on, Bakare realized she could help the SCD community pursue a universal and affordable cure while using her background in PR to raise awareness.
“When you choose to be a lawyer, you choose to be a voice for the voiceless,” said Bakare, 34, who runs her own PR firm and lives in Seattle. 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 Patient, where she interviews patients and others about their personal stories with sickle cell disease. She also plans to write an editorial for The essence magazine, participate in an interview with her local ABC station, and participate in a video series on curative therapies for the Heart, Lung, and Blood Institute, and the National Institutes of Health (NIH) Human Genome Research Institute. It’s important to share her stories as well as others so the public can learn 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 series of events throughout September.
Sick Cells, which focuses on telling the stories of those with the disease to help drive policy change, will host its Coverage for SCD Summit. The Aug. 31 virtual meeting will discuss why SCD is costly, patient access challenges and managed care plans.
Meanwhile, the Sickle Cell Disease Coalition (SCDC), which represents more than 100 national and international SCD nonprofits, has scheduled its annual summit for September 9.
“The SCDC Annual Summit allows SCDC members to gather, celebrate and strategically plan for collective action over the coming years,” said Tessa Youngner, coalition programs specialist.
SCDC will offer its own National Archives of Sickle Cell Awareness page 2022 and will include resources on 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 light on the condition can download and print flyers that include statistics about SCD and tips for staying healthy with the disease.
Global Blood Therapeutics and SCDAA will co-host the 11th Annual Sickle Cell Disease Therapeutics Conference on September 14 at 9 am ET. The conference will cover the latest advances in treating the condition.
The association will also host three Twitter parties in September. Twitter Q&A threads will begin on September 19th from 12:30–1:30 PM EST. The first event will focus on advocacy and awareness. The next event, on September 21, will cover mental health, and the final event on September 23 will look at pharmaceutical initiatives and finding a universal treatment.
Beyond these virtual events, the association asks people to continue working to dispel myths about SCD, lighting public spaces and buildings red, and registering for an online blood drive.
Meanwhile, area organizations will help raise awareness through walks and runs, blood drives and other SCD-related events.
The California-based organization Cayenne Wellness will host its 14th Sickle Cell Disease Education Summit, September 15–17, in San Diego. The theme of this year’s workshop is “Embracing Possibilities” and listeners will hear about the latest treatments for sickle cell, racism and SCD, and national policy updates. The first day of the summit will end with a celebration of life ceremony.
Georgia’s small nonprofit RedMoon Project will release images of patients from a photo shoot as part of an effort to put a human face on sickle cell disease.
“I wanted to highlight the faces of SCD that look more outside and not always sick,” said Cory Lewis, founder of RedMoon.
NIH has also made a number of resources available to increase awareness of SCD and improve care for those affected by the disease. Leaflets for patients focusing on healthy living, pain management and hydroxyurea are available on her website.
Patients like Bakare and Edwards Mann hope all these initiatives and events can educate those who don’t know about sickle cell.
“I want to be able to walk down the street and say, ‘I have sickle cell disease,’ and not have someone look at me and say, ‘I’ve never heard that in my life,'” Bakare said.
