Portraits of strength: Bringing sickle cell into focus

Our commitment to the sickle cell community goes beyond our research. We understand that true impact comes from collaboration and amplifying the voices of those directly affected by sickle cell disease (SCD). That is why we partnered with Heather Avant - a photographer, patient advocate, and Sickle Cell Warrior - to bring the lived experiences of SCD Warriors into focus. Through Heather's lens, we captured powerful portraits of Ijeoma, Howard, Sharonda, Tray and Dominique and stories that speak to the strength and resilience of those living with SCD.

Self portrait of Heather Avant, photographer living with sickle cell disease

Capturing the Warrior Spirit

Heather Avant's journey as a photographer began in her childhood. It was a way to hold onto moments that might otherwise be lost due to memory loss caused by the intense pain management required by her SCD. What started as a necessity quickly evolved into passion, and eventually into a powerful means of advocacy - a way to show the world the strength and resiliency of those living with SCD. Today, Heather is a professional photographer with clients all over the country through her company, Artfully Avant. While her portfolio spans a wide range of subjects, her work with fellow Sickle Cell Warriors remains closest to her heart. Her Warrior photography chooses not to focus on the frailty often associated with a chronic illness like SCD; instead, she highlights the power and humanity of her subjects. "Sickle Cell Warriors are ordinary people with the same hopes and dreams as anyone else," Heather said. "But the truth is that we fight every day, and I want my photos to capture that - the fight, the strength and the beauty in that struggle."

A partnership rooted in advocacy

Our collaboration with Heather was born from a shared commitment to uplift the sickle cell community. The goal was clear: to capture and share stories of SCD Warriors in a way that honors their experiences and elevates their voices. For Heather, this partnership was deeply personal. It allowed her to combine her artistic talent with her passion for advocacy by capturing images that not only showed the essence of Warriors but also empowered them. "Working with Vertex allowed me to continue a dream of mine - to capture the strength of Warriors through my lens" Heather recalled. "It was one of my happiest moments shooting photography."

Highlighting the mental and emotional battle of SCD

Sickle cell disease is not just a physical battle; it's a mental and emotional one as well. One of Heather's main goals is to bring these often-overlooked aspects of SCD to the forefront of the conversation. She emphasizes the need to look at sickle cell disease holistically and the need for comprehensive care to address the mental and emotional challenges of living with SCD.

"There's a lot of emotional weight that comes with this disease," Heather explained. "The constant pain, the isolation, the hospital visits and the feeling of being different - it all adds up. It's not just about managing the physical symptoms; it's about supporting the whole person."

Through her work, Heather aims to inspire and uplift the SCD community, reminding them that they are not alone. "I want other Warriors to see these photos and think, 'I can do that.' Seeing your story told through someone else's eyes can be incredibly validating. It lets you know that you're not alone and that your experiences are real and important."

A shared commitment to the sickle cell community

We remain committed to the SCD community, not only through our scientific endeavors but also through our partnerships with advocates like Heather. We believe that stories like these are essential to driving real change. Each story told, each portrait shared, is part of our ongoing effort to support the SCD community and advocate for better care and support. The humanistic burdens of sickle cell disease - including the mental and emotional challenges - are profound, and by amplifying the voices of those with SCD, we hope to bring greater awareness to these overlooked aspects of the disease.

"We are all Warriors, and we deserve to be seen," Heather said, and we couldn't agree more.

Ijeoma

"Sickle cell disease extends beyond physical pain; it has mental and emotional implications that affect every aspect of your life."

Ijeoma Azubuko is a patient advocacy leader who has dedicated her life to supporting the SCD community. It's a cause that's deeply personal to her, as both her twin brother and younger sister also have SCD. Ijeoma emphasizes that SCD is not just about pain crises; it affects people's mental health and their ability to live life fully. She is passionate about breaking down SCD misconceptions and showing that Warriors are strong, multifaceted individuals who can thrive despite the obstacles they face.

"People with sickle cell are some of the strongest you will ever meet. We're not just surviving. We are living full, accomplished lives and it's important to share that part of our story."

Howard

"Living with sickle cell disease can be a daunting experience. It wears you down mentally. Can you imagine living with the thought, 'What if this is the last time I'm seeing these people?'"

Howard French has spent his life working to improve the lives of others in the SCD community. A seasoned Warrior, Howard understands the complexities of this disease, particularly the mental toll it takes. He remains resilient and hopeful, always pushing forward for better treatment options and greater awareness.

"Sickle cell disease is just one component of my life. [Warriors] can live accomplished lives. We have such a zest for life, and when it's a good day, we go all out because we don't know what tomorrow will bring."

Sharonda

"Living with sickle cell disease, your mental health really begins to take a toll. I am a firm believer that when you don't take care of your mental health, it's going to show up somewhere in your body. I think that's what happened to me, because I didn't talk to anybody about what I was going through."

Sharonda Sikes is a patient advocacy leader who channels her personal experiences into her advocacy work, focusing on the importance of mental health in managing sickle cell disease. Her leadership and commitment reflect her belief that a strong support system is vital for all Warriors navigating this disease.

"There's a different type of strength that us Warriors have. It's a mental toughness that makes us strong and resilient. But it also makes us so, so grateful for life."

Tray

"As a Warrior, there are times when you want to do the basic things, but you physically just can't. As a man, as a father, you want to be able to play with your kids, but if you're in pain, you can't. Everything [Warriors] do, we must limit ourselves, and it perpetuates a negative cycle."​

Community health coordinator Tray Thom has turned his personal journey with sickle cell disease into a passion for education and advocacy with a particular focus on men's mental health. He is dedicated to ensuring that others understand the importance of mental well-being in addressing sickle cell disease and the power of positivity in overcoming the challenges of living with the disease.

"I may have sickle cell disease, but sickle cell disease does not have me. I try to live as normal a life as possible, and I do everything I can to ensure that I live a life I'm proud of."

Dominique

"For three years, I saw a therapist…it felt like a taboo topic, something that I couldn't talk about. But it's about dealing with the trauma that comes with living with this disease."

Dominique Goodson is a passionate advocate within the sickle cell community. Her involvement is driven by her personal experiences with the mental health challenges of living with sickle cell disease. Dominique emphasizes the importance of therapy and breaking the stigma surrounding mental health. She believes that addressing these issues is essential for the well-being of all Warriors.

"Sickle cell is not a disease for the weak. It makes us strong, resilient, and more grateful for life."

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