Scar Stories – A Visual Testimony of Sickle Cell Warriors

Revealing Resilience, Courage, and Lived Experience

Scar Stories is a compelling photographic exhibit that captures and honors the lived experiences of individuals navigating life with sickle cell disease (SCD). Through a series of intimate, thoughtfully composed portraits paired with deeply personal narratives, the exhibit brings to light the visible and invisible scars carried by those who live with this lifelong condition. Each story offers a window into the daily realities, challenges, and triumphs of individuals whose strength is often unseen.

For many people living with SCD, scars extend far beyond the marks left by medical procedures. They serve as powerful symbols of endurance, resilience, and courage — testaments to battles fought both physically and emotionally.

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Bring Scar Stories to Your City

Scar Stories: A Visual Testimony of Sickle Cell Warriors is a traveling exhibition that brings the voices, resilience, and lived experiences of sickle cell warriors to communities across the country. Through powerful portrait photography and personal narratives, the exhibit invites audiences to engage with the realities of sickle cell disease while honoring the strength and courage of those living with it.

Scar Stories can be hosted by:

Universities
Hospitals and medical centers
Art galleries
Conferences and symposiums
Community organizations
Cultural institutions

The exhibit can include:

Gallery-style photographic installations
Artist talk or keynote presentations
Panel discussions with warriors
Community engagement sessions
Educational programming

Current & Upcoming Exhibits
Glendale, California (USA)
Dates: July 31, 2026 – December 6, 2026*
Location: CWC Art Gallery
216 S. Louise Street
Glendale, CA 91205

*Saturdays and Sundays from 10:00 am – 6:00 pm

Additional Locations Coming Soon
More exhibit locations will be announced soon as Scar Stories travels to new communities.

Interested in Hosting the Scar Stories Exhibit?
We welcome partnerships with institutions that share our commitment to education, awareness, and community engagement.

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Increasing Awareness & Advocacy

Bringing visibility to sickle cell disease: a genetic blood disorder that affects thousands of individuals and families in the USA and millions worldwide, yet remains widely misunderstood and underrepresented in public discourse. Through the powerful intersection of art, storytelling, and community engagement, Scar Stories creates a platform where the voices and lived experiences of sickle cell warriors can be seen, heard, and honored. The project seeks to:

Increase awareness and understanding of sickle cell disease and its daily realities
Celebrate the strength, resilience, and dignity of individuals living with sickle cell disease
Foster empathy and cultural understanding within the healthcare system and broader community
Build stronger networks of support for warriors and their families
Inspire advocacy and action toward improved care, equity, and research

By transforming personal scars into powerful stories, Scar Stories invites audiences to witness not just the challenges of sickle cell disease, but the extraordinary resilience of those who live with it every day.

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“By documenting the physical scars and personal narratives of individuals living with sickle cell disease, this project transforms what is often hidden into a powerful visual testimony of survival, resilience, and strength.”

– Dr. Carolyn Rowley | Executive Director, Cayenne Wellness Center

Show Your Support

Support the project and help amplify the voices of sickle cell warriors.

Limited Edition Scar Stories Book
A beautifully printed photo book featuring portraits and stories from the exhibit.

Scar Stories T-Shirt
A versatile shirt, sure to drive conversation, awareness, and solidarity.

Scar Stories Tote Bag
A durable tote designed to spread awareness while supporting the project.

The official Scar Stories Book, Tote Bag, and T-Shirt are available at the Gallery Store during the exhibit. Can’t attend in person? Select merchandise will also be available for purchase online.

Behind the Exhibit

Photographer: Heather Avant | Artfully Avant

Heather Avant is an artist, photographer, and sickle cell advocate whose work centers on capturing authentic human stories through powerful portrait photography. She is the founder and owner of Artfully Avant, LLC, a photography studio she launched in 2016 to bring her vision of storytelling through imagery to life.

Originally from southeastern Michigan, Heather earned a Bachelor of Fine Arts in Photography from Eastern Michigan University, where she developed her passion for visual storytelling and documentary-style portraiture. Her artistic philosophy is rooted in the belief that every person, place, and moment has a story to tell, and that the camera can reveal those stories in ways words cannot.

Heather’s work is deeply informed by her own lived experience as a sickle cell warrior, having lived with the disease for more than four decades. Through her photography and advocacy, she seeks to highlight the resilience, humanity, and strength of individuals living with chronic illness while challenging the stigma often associated with sickle cell disease.

As the photographer behind Scar Stories: A Visual Testimony of Sickle Cell Warriors, Heather captures intimate portraits that reveal both the visible and invisible scars carried by members of the sickle cell community. Her images illuminate not only the physical realities of the disease but also the courage, dignity, and beauty of those who live with it every day.

Through her lens, Heather invites viewers to see sickle cell warriors not through the limitations of illness, but through their strength, humanity, and enduring spirit.

Press Kit Quick Facts

Name & Title: Heather Avant, Photographer
Studio: Artfully Avant
Medium: Portrait Photography
Focus: Storytelling, health advocacy, community narratives
Project: Scar Stories: A Visual Testimony of Sickle Cell Warriors

Creative Director: Dr. Carolyn Rowley | Cayenne Wellness Center

Dr. Carolyn Rowley is a nationally recognized advocate, community leader, and visionary dedicated to improving the lives of individuals living with sickle cell disease. She is the Founder and Executive Director of Cayenne Wellness Center, a California-based nonprofit organization established in 2000 to address the critical gaps in services, education, and support for the sickle cell community.

Diagnosed with sickle cell disease as a toddler, Dr. Rowley has spent her life transforming personal experience into powerful advocacy. For more than two decades, she has led initiatives that provide education, mental health support, community health worker programs, and culturally responsive services for individuals and families affected by sickle cell disease.

Through Cayenne Wellness Center, Dr. Rowley has built partnerships with healthcare providers, researchers, community organizations, and government agencies across California to increase awareness, improve access to care, and advance health equity for the sickle cell community.

As Creative Director of Scar Stories: A Visual Testimony of Sickle Cell Warriors, Dr. Rowley brings both personal insight and strategic vision to the project. Her leadership ensures that the stories of sickle cell warriors are presented with authenticity, dignity, and purpose – amplifying voices that have too often gone unheard.

Through Scar Stories, Dr. Rowley continues her lifelong mission to elevate awareness, foster empathy, and honor the resilience of the sickle cell community.

Press Kit Quick Facts

Name & Title: Dr. Carolyn Rowley, Executive Director
Organization: Cayenne Wellness Center
Role: Creative Direction, Project Vision, Community Engagement
Focus: Health equity, patient-centered care, community-based education
Project: Scar Stories: A Visual Testimony of Sickle Cell Warriors

Background: Founder and Executive Director of Cayenne Wellness Center, a nonprofit dedicated to improving the quality of life for individuals living with sickle cell disease.

Mission: To elevate the voices and lived experiences of sickle cell warriors through art, storytelling, and community engagement.

Narratives Curated by: Dr. Patrise Holden | The Language Key

Dr. Patrise Holden, founder and CEO of The Language Key^®, is a communications specialist, national journalist, and music therapy educator. Widely recognized for her gift of storytelling, her innovative educational programs, and award-winning work in communication and journalism, Dr. Holden has built a career centered on helping others find clarity, confidence, and power in their voice.

Diagnosed with Sickle Cell Disease, genotype SS, at just six months old, Dr. Holden brings both lived experience and professional expertise to her work. Her life’s journey, both personal and professional, has shaped a deep commitment to advocacy for individuals living with chronic illness and disabilities. Dr. Holden is dedicated to giving those without voice a place to also be heard. As co-founder of A Place to Just Be, Unfiltered Talk and Truth, she facilitates an international weekly support group that fosters honest dialogue, connection, and healing.

Gifted in translating complex, layered life experiences into meaningful narratives, Dr. Holden’s life’s work as a storyteller, layered with a tumultuous history of sickle cell disease, drew her to Scar Stories. This historic project reveals the internal and external scars of living with sickle cell disease, with many of the stories contained therein never before revealed.

For Dr. Holden, the project is more than visual storytelling; it is a powerful statement that transforms an invisible disease into stories and art. Having lived a life often marked by feeling unseen, unheard, and misunderstood, she understands the power of being seen and understood through storytelling. She also recognizes the humanity and in the compassionate act of sitting down to ask, “Tell me your story,” and that for many involved in Scar Stories, they have waited their entire lifetime for someone to ask.

“…perhaps that is the greatest difference between ordinary battle warriors and sickle cell warriors. One may train for war. The other awakens to battle already raging within them, and somehow still finds the courage to live beyond it.”

– Dr. Patrise Holden | The Language Key

Why Scar Stories Matter

For generations, sickle cell disease has remained one of the most underrecognized and under-resourced genetic conditions in the United States, despite affecting predominantly Black and historically underserved communities. While medical advances continue to emerge, awareness, understanding, and equitable access to care still lag behind. For many individuals living with sickle cell disease, the journey includes hospitalizations, invasive procedures, chronic pain, and emotional challenges that leave both visible and invisible scars. Yet the lived experiences of sickle cell warriors are rarely represented in art, media, or public conversation.

Scar Stories seeks to change that.

By documenting the physical scars and personal narratives of individuals living with sickle cell disease, this project transforms what is often hidden into a powerful visual testimony of survival, resilience, and strength. At a time when conversations about health equity, representation, and patient-centered care are more important than ever, Scar Stories creates space for the sickle cell community to be seen — not as statistics, but as individuals with powerful stories that deserve recognition and respect.

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“As the photographer and warrior myself, Scar Stories is a true visualization of the aftermath of sickle cell on the human body. As warriors, we bear the scars of battle.”

– Heather Avant, Photographer | Artfully Avant

Every Scar Tells a Story

Behind every photograph in Scar Stories: A Visual Testimony of Sickle Cell Warriors is a lived experience — moments of pain, perseverance, courage, and survival. The scars shown in this exhibit are more than medical marks; they represent journeys shaped by strength, resilience, and hope. Each warrior carries a story that deserves to be seen and heard. Through their willingness to share their experiences, these Warriors invite viewers to better understand the realities of living with sickle cell disease and to recognize the humanity behind the diagnosis.

“My scars are a display of my resilience and refusal to be broken, and of redemption, that even in the worst life situations, I can choose to come out better and stronger…”

— Sickle Cell Warrior

Through these stories, Scar Stories honors the warriors who have chosen to transform their experiences into a powerful testament of courage and community.

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