Patient Leader Spotlight: Elle Cole
Last updated: September 2022
This Sickle Cell Awareness Month, we're taking the opportunity to shine a light on some of our community's most influential change makers. This week, we're featuring sickle cell advocate, caregiver, and author, Elle Cole. Learn about her advocacy journey below!
What made you want to write a book about sickle cell? What impact do you hope your book will have?
My daughter had her first sickle cell pain crisis at 5 years old. The pain episode lasted for several days, and she was afraid. As a result, I wanted a book about sickle cell disease that she could identify with characters who reflected her family. I knew I needed to explain what was happening inside her body, so after her crisis, I wrote 'ABCs for Sickle Cell Disease'. I wrote it in 2013, but it took me 6 years to finally publish it.
What was the process for getting published? Were there any challenges?
Early on, I wasn't sure how to publish my book. I didn't have a literary agent, but I knew that there were other children like my daughter who could benefit from the book. Some companies reached out to me about publishing, but they were expensive.
I knew my husband and I would be funding the project ourselves, so I decided to self-publish my book. Hiring someone to illustrate my book was costly professionally, but I knew the sickle cell community deserved to have beautifully illustrated books. I worked with 2 illustrators before I found one who could capture the vision I wanted to convey.
What keeps you motivated? What impact has your work had on others?
I do many different things in the community, such as advocate with my legislators to make sure bills are passed in my local community that will impact the future lives of sickle cell patients. I also co-hosted the Sickle Cell Caregivers Summit with the Sickle Cell Community Consortium and produced the Vitamin SC3 Podcast to share real families'; stories about sickle cell disease.
However, my first love has always been writing. I have always wanted to publish books that impact the lives of others, so writing my sickle cell books is a dream come true for me. My published titles are:
• 'ABCs of Sickle Cell Disease'
• 'A Sickle Cell Coloring Book for Kids'
• 'The Ultimate Sickle Cell Activity Book'
• 'Aprendiendo Sobre la Enfermedad de Células Falciformes'
• 'Un Libro Para Colorear de Células Falciformes Para Niños'
I’m grateful that the sickle cell community has embraced my books. Currently, over 20 hospitals and sickle cell community based organizations use my books to teach pediatric patients. The hospitals include Children’s National Hospital in Washington, DC; Odessa Brown Children’s Clinic in Seattle, Washington; and Sickle Cell Society in Lincoln, England.
Sickle cell disease is a genetic blood condition that can affect any person regardless or their ethnic background. The community appreciates that my books highlight the diversity within the sickle cell community.
A sickle cell caregiver from Texas wrote, “This book is even better than I hoped! Not just a coloring book, it is also educational and a great way to introduce your little Warrior to Sickle Cell. I LOVE how multicultural the pictures are, a nod to the fact that Sickle Cell affects all ethnicities. This would also make a great gift for classmates of a Warrior, so they could understand how to help their friend. Well done, Elle!”
A Florida nurse who works for sickle cell nonprofit shared, “The bold colors and descriptions of sickle cell are so magical as you read each page. I will be sharing these with our support groups."
The founder of an Atlanta-based sickle cell nonprofit worked hard to get my book in Georgia’s libraries. She wrote, “Can’t wait to color with the girls. This is a great book to educate little ones about sickle cell disease.”
What future projects are you working on?
I am working on a guided journal for parents that will be published soon. I am also planning the next virtual Sickle Cell Caregivers Summit. Each Monday, the sickle cell community can also catch new episodes of the VitaminSC3 Podcast.
How do you make time for sickle cell advocacy while juggling a career and family?
When my daughter was 3 months, I left my corporate job and became an entrepreneur. Afterward, my career and my passions became intertwined. I am a full-time consultant, producer, author, speaker, and writer. Entrepreneurship keeps me active and gives me the flexibility to look after my daughter because sickle cell disease is unpredictable.
Besides your book, how else do you advocate for families impacted by sickle cell?
I advocate for patients living with sickle cell disease in various ways. I sit on the Children's National Hospital Community Advisory Board, Sick Cells Ambassador Program, Amplify Sickle Cell Voices International Inc., and AllStripes Rare Disease Ambassador. In 2020, I received the Advocating for Another WEGO Health award. Then in 2021, I partnered with the Sickle Cell Community Consortium to co-host the first annual Sickle Cell Caregiver Summit. In 2022, Global Genes interviewed me regarding their 'Know Your Family History Project'.
I look for ways to let the world know about sickle cell disease.
Are you interested in connecting with other sickle cell warriors?