August's warrior spotlight was Wunmi Bakare, Founder of WBPR Agency, Creator of Sickle Cell Prodigy, and Executive Producer of #ThroughTheGenes Podcast
Hemoglobin Genotype: hemoglobin SS (most common and severe genotype)
status post stem cell transplant in 2019
Share your journey with sickle cell disease and how it impacted your life.
My journey with sickle cell disease began when I was just 18 months old, and my pediatrician, Dr. Dorothy Esangbedo, diagnosed me with the condition. At such a young age, I didn’t understand the full gravity of my diagnosis, but knew I would fall sick often which ultimately, affected my attendance. Growing up in Nigeria, where sickle cell disease is often deemed a social stigma, my parents were intentional about not disclosing my condition due to fear of judgment and mistreatment.
By the time I was 7, I faced a significant health crisis - osteomyelitis (bone infection) in both arms - and underwent my first major surgery in 1994, initially misdiagnosed as malaria, but later identified as a severe bone infection that had spread through my bloodstream. The treatment required two major surgeries and a three-month hospital stay.
Navigating life with sickle cell disease required immense resilience and by the time I was 15 years old, I gained admission to the University of Texas at Austin majoring in Biology (pre-med). My parents had instilled a strong sense of independence and self-sufficiency, making the transition to studying in the U.S. smooth.
Living in a foreign country with no familial support while juggling school, a chronic illness and a demanding pre-med schedule led to a health breakdown. In my junior year, I made the hard decision to pivot to Public Relations, a career path that allowed me to harness my talents in communication and branding.
The severity of my condition, hemoglobin SS, was a significant challenge for well over 30 years. However, a turning point came in 2017 when I participated in an NHLBI clinical trial and underwent an allogeneic stem cell transplant at the NIH’s Clinical Center. This experience was nothing short of life-changing, drastically improving my health and quality of life.
Today, I’m managing sickle cell-related complications like iron overload and avascular necrosis while also adjusting to life on the other side of sickle cell disease. I continue to thrive as the Founder of WBPR Agency and the Creator of Sickle Cell Prodigy, a collaborative hub for patients who are creating remarkable legacies through advocacy.
My advocacy efforts focus on erasing the stigma of sickle cell disease through proactive and reactive engagement with the media. I work with patients, caregivers, and advocacy groups to understand community challenges and highlight opportunities for authentic patient engagement. While challenges remain, I remain committed to using my experiences to support and uplift others facing similar struggles.
What are some common misconceptions about sickle cell disease that you would like to debunk?
Sickle cell disease is often misunderstood, and several misconceptions have contributed to stigma and misinformation. One of the biggest misconceptions is that sickle cell disease is contagious. In reality, it’s a genetic disorder passed down from parents to children through their genes. You can’t catch it from someone who has it.
Similarly, some people believe that sickle cell disease only affects Black people, and while it is most common among individuals of African descent, sickle cell disease can affect people of any ethnicity but it is more prevalent in people from Mediterranean countries, the Middle East, and India.
Globally, a common misconception is that there is no effective treatment for sickle cell disease. While there is currently no universal cure, there are effective treatments available that can manage symptoms and improve quality of life. Treatments include pain management, blood transfusions, Hydroxyurea, Oxbryta, Endari, Adakveo (disease-modifying medications that help reduce sickle cell vaso-occlusive crises), and, transformative therapies like, bone marrow transplant and gene therapy.
How do you manage the symptoms and challenges associated with SCD in your daily life?
I can hardly believe it’s been almost 5 years since my transplant. Before that, sickle cell disease was such a dominant force in my life—dictating where I lived, what I did, and how I managed daily activities. I always had a packed hospital bag ready for the unpredictable nature of the disease. However, my life has changed significantly since the transplant.
Years after the transplant, I still deal with chronic pain, especially in my joints, often exacerbated by Seattle’s weather and stress. To manage this, I changed my diet and began identifying foods that exacerbated my symptoms. I discovered that refined sugars caused joint inflammation and quickly removed it from my diet. This change helped reduce my pain level significantly.
I worked closely with my doctor to transition off opioid medications, which led me to a pain specialist who prescribed methocarbamol (Robaxin). This medication has been effective for treating my bone pain without the addictive side effects of opioids. Alongside medication, I incorporate yoga, a balanced diet, deep breathing exercises, and distraction techniques into my routine. These strategies have been crucial in managing my pain and improving my overall well-being.
One of the most remarkable changes has been my increased energy levels. Previously, I dealt with constant fatigue and struggled to keep up due to low hemoglobin. Now, with my hemoglobin levels between 12 and 13, I can enjoy activities like running up the stairs, playing soccer with my nephew, and even taking 30-minute walks. I’ve also resumed dancing competitively, a passion of mine that I had to set aside for years.
Describe a particularly difficult moment you've faced because of SCD and how you overcame it.
One of the most difficult moments I faced because of sickle cell disease occurred in my early 20s and involved a deeply personal experience that left a lasting impact on my heart and self-worth. This event centered around the challenges of dating with an invisible disability.
In 2008, I was introduced to a young man through a mutual friend, and after spending some time getting to know each other, we decided it was time to meet in person. Upon arriving, I started to feel the onset of a vaso-occlusive crisis—my chest began tightening, and my joints ached. I knew that the change in altitude from the flight could trigger a crisis, but I was not prepared for the unfortunate turn of events.
As the night went on, the pain worsened, and I was not ready to disclose my health diagnosis, so I called a girlfriend in the area who took me to the nearest ER. While I was receiving treatment, my friend concocted an elaborate cover story so he wouldn’t suspect anything but by morning, my sickle diagnosis had been revealed through a mutual friend.
Returning to his home, I found my belongings left at the door. He asked me to leave stating, "I never want to be seen with a girl who is dying". It was a cruel and painful encounter that shattered me emotionally.
Although it was a heart-breaking experience, it led to profound personal growth. I took some time to rebuild my sense of self-worth and realized that his words do not define me. In the months that followed, I found strength in the support of true friends. I came to understand that while sickle cell had its challenges, it also contributed to some of my most cherished traits—compassion, empathy, and kindness. I walked away from that situation with my head held high.
This experience taught me an important lesson about vulnerability and honesty in relationships. While it’s essential to be truthful about a chronic illness, it’s equally important to do so at the right time. Building trust and understanding in a relationship should precede the disclosure of private health information.
Through this difficult moment, I learned the value of self-respect and the importance of timing and trust in sharing personal information. It shaped how I approach relationships and has reinforced my belief in facing challenges with resilience, poise, and grace.
What advice would you give to others living with sickle cell disease or to their caregivers?
Three things come to mind when I think of advice to fellow warriors or caregivers. The first is to prioritize your health because you come first. Keeping it completely honest, it has been the hardest lesson for me to learn because I am an empath. I deeply care for others far more than I care for myself. Maintaining regular check-ups with your healthcare team is essential. Stick to a treatment plan that works for you, take your medications, stay hydrated, and keep track of any changes in your symptoms. Consistent care can help manage the disease more effectively.
Secondly, learn how to listen to your body so you can better understand it. Sickle cell warriors are like snowflakes, no two patients are exactly alike. Learn how to recognize the signs and identify your triggers. This can help you take preventive measures and seek medical help before a crisis worsens.
And the most important (especially as you get older), create/find your #SickleCellTribe. There is no textbook definition of a #SickleCellTribe but in my own words, a #SickleCellTribe consists of health workers, advocates, patients, caregivers, families, and communities linked by their connection to sickle cell disease. Other sickle cell warriors will be your greatest allies and will understand you intuitively because they live with the disease too.
Surround yourself with friends, family, and support groups who understand the condition and can offer emotional and practical support. Sharing experiences with others who have sickle cell disease can provide comfort and useful insights.
Share a positive experiences or silver lining that have come from your journey with SCD.
My journey with sickle cell has taught me how to live an impactful life. Sometimes when I speak on panels or delve into conversations with mentors/mentees, I am reminded of how colorful my life has been. In college, my health setback taught me how to pivot and see infinite possibilities because we are all multifaceted humans. Every time I peel back another layer of myself, I am gobsmacked by what I continue to discover. Sickle cell is a part of my identity but so is being a daughter, a sister, an aunt, a friend, a boss, a partner, a patient advocate, a colleague, a podcaster, and everything in between.
I bring a unique set of skills to every room I walk into that cannot be replicated or duplicated. I’m a multicultural Nigerian woman, born in the 80s, who has lived with sickle cell disease, researched blood diseases, participated in clinical research through my stem cell transplant, and is now figuring out life after sickle cell disease. I have received medical care on 4 different continents and have a global understanding of healthcare systems (the good, the bad, and the ugly). What I bring to the table is a deep understanding of the healthcare ecosystem and the needs of the SCD community.
As a transplant survivor, I am now a caregiver to my warrior friends who still battle this debilitating disease. My skill set cannot be taught because it has to be experienced firsthand that’s why I am taking up space in the healthcare and pharma industry. Sickle cell is the rock on which I have built this perfectly imperfect life and I owe her everything.
What are some ways you advocate for yourself and others in the sickle cell community?
My dreams of becoming a doctor didn’t go as planned so I’ve charted a path less traveled through advocacy and activism – using an ‘unconventional’ approach to advance equitable outcomes for the patient community by harnessing my voice, talent, and lived experience to raise awareness and revise healthcare policies.
There is more to patient advocacy than just raising awareness. It involves ensuring access to care, mobilizing resources, influencing health policy, and addressing health inequities. Earlier this year, I joined the Sickle Cell Disease Partnership, which is an active, member-based collaboration of like-minded organizations and individuals focused on achieving actionable federal policies and programmatic solutions to improve health outcomes for individuals living with Sickle Cell Disease.
I also sit on the patient advisory board for Beam Therapeutics and Vertex Pharmaceuticals, where I work with other SCD thought leaders to refine patient education materials. By providing valuable insights on the clinical trial process, researchers, healthcare practitioners, and doctors can ensure that curative therapies are designed to meet the needs of people affected by sickle cell disease.
And finally, I am on the Board of Directors and the Director of Communications for Through The Pain Inc., a 501(c)3 non-profit organization dedicated to offering supportive services to individuals with Sickle Cell Disease and their families.
My work with the organization has led to the creation of #ThroughTheGenes, an informative podcast series that highlights the risks, benefits, and limitations of cell and gene-based therapies as a curative option for sickle cell disease. The podcast is supported by the National Human Genome Research Institute (NHGRI-NIH).
Lastly, what is one important lesson or insight that living with sickle cell disease has taught you?
One important lesson that living with sickle cell disease has taught me is the profound value of resilience and adaptability. Sickle cell disease is a relentless challenge, often presenting unpredictable pain and complications that can upend plans and routines.
Through this journey, I've learned that resilience isn’t just about enduring hardships—it's about adapting to them with a positive mindset and finding strength in the face of adversity. This means acknowledging the difficulties and embracing the moments of struggle while also celebrating the small victories and moments of joy.
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