Rare Life
August 31, 2022

Photos Not Taken: A Video Series on Living With Sickle Cell Disease

Featured imagePhoto shows Bukky with their hands on their chin and cheeks, wearing a pink flower crown.
The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart.

AllStripes is proud to host two videos by the artist Bukky Adeyokunnu. Bukky’s work is lively and engaging, fierce and intimate, bold and vulnerable. The Baltimore –⁠based photographer has chronicled a wide range of subjects, including sacred places, protests and the process of getting ready, never failing to center humanity in every shot. As someone living with sickle cell anemia, Bukky has also turned their lens toward telling stories of living with the condition.

Sickle cell disease is a group of rare blood disorders that affect the red blood cells, which are important for moving oxygen throughout the body. Symptoms range, and can include severe pain, infections, organ damage and stroke. One of Bukky’s projects, called The Warrior Series, came into being after they spent time in the hospital. “I began researching documentaries and photo series about sickle cell,” they explain. “Disappointed by what I found — sad stories, stories that narrow in on the pain and, stories that tell how there is no cure — I decided it was time for a different narrative. One of strength, hope and joy.” The results are transcendent, much like the two videos below, which tell Bukky’s individual story.

The first is an excerpt from a 2013 video Bukky titled “Future Photographs.” 

The next, created exclusively for AllStripes, is a follow-up to the video above, a letter from 2022 Bukky to 2013 Bukky about many facets of life, including living with sickle cell. Watch to learn more about the advice Bukky has for the person they were, delivered with warmth and eloquence from the person they are now.

If you have been impacted by
sickle cell disease
learn more about the benefits of joining AllStripes
by visiting our
sickle cell disease
research program page.