Wunmi Bakare described her illness to Essence as a continuous tug-of-war. Balancing sickle cell disease with a nine to five job and trying to stay the course. Then there is Wunmi’s other goal which is to advocate for patient equality and social inclusion. Wunmi is trying to erase a stigma. She is doing it through proactive interaction with the media.
Wunmi works closely with Teonna Woolford, another Black woman with an equally important goal which is to end disparities in SCD reproductive health. Yet underlying all this both women are coping with fatigue and chronic pain caused by SCD.
In addition to struggling with SCD, patients must steel themselves against the stigma that they lack motivation and are unable to hold full-time jobs.
The month of September is celebrated by sickle cell disease patients and their families who are hoping to raise awareness for a disease affecting approximately six and one half million individuals worldwide, primarily people of African descent.
Although the effort is ongoing, September stands out as a time to increase understanding and public knowledge of sickle cell disease throughout the world.
About Sickle Cell Disease (SCD)
The disease is a life-threatening blood disease. Sickle cell disease is inherited. The disease, which usually develops in early childhood, disrupts blood to major organs such as the brain, heart, kidneys, and liver.
Symptoms and complications such as stroke, infection, chronic pain, and avascular necrosis (reduction of blood flow to the bone) plague SCD patients throughout their lives.
Although bone marrow or stem cell transplant is currently the only cure for SCD, access to transplants is limited in accordance with the number of available donors.
It is true that SCD causes anxiety and fatigue but many patients will not allow the disease to disrupt their lives. They thrive and are able to excel in their careers.
As the profiles listed in this article will show, many SCD patients are productive and able to hold responsible, full-time jobs.
Wunmi explains that she was able to receive a stem cell transplant due to her enrolment in a clinical trial. But she also explains that this curative therapy is not available to all patients.
Before she received the transplant, Wunmi worked as a media counsel for companies such as Purina, Tyson Foods, and Unilever. She found that the pressure of the job plus coping with SCD was overwhelming. Wunmi managed to recreate her career for a well-known PR firm while at the same time balancing work and her sickle cell disease.
Chris Abdullahi founded the Sound of Sickle organization for the purpose of education, raising awareness of SCD in the United Kingdom, and facilitating blood donations. Chris works for CNN International as a project manager. He readily admits that his “balancing act” has been difficult but he still successfully combines his work and his health commitments.
Another SCD patient who also describes managing his health symptoms as a constant tug of war is Ade Adeyokunnu. Abe successfully performs a dual role. In his corporate role, he is the marketing manager for Meta. His other role is as a patient ambassador at AllStripes, a research company focusing on new therapies to treat rare diseases. Abe is well aware of what it takes to manage the company’s expectations and at the same time manage his own health.
Simone Day is another pioneer and SCD advocate. Simone works at PGDx as a genomic technologist. Simone founded Crisis Care which is dedicated to familiarizing people with SCD by promoting the need for blood donations and genotype testing.
Prior to her successful stem cell transplant, Simone had to cut back on her career plans due to several long-term hospitalizations. However, she regrouped and moved up to genomic technologist from her role as a clinical laboratory scientist.
And lastly, Jenica Leah, author of My Friend Jen, a well-known children’s series, is considered to be one of the leading SCD ambassadors in the United Kingdom. Jenica, who founded JLG Publishing, has been featured on TED x, BuzzFeed News, the BBC, Forbes, and Al Jazeera.
Leah also admits to setbacks due to her health. She created a plan to accept and then recover from these setbacks. Leah is grateful for discovering her writing talents as being an author gives her flexibility and an occasional day off.
