This is a guest article written by Elle Cole from CleverlyChanging.com.
World Sickle Cell Day is on June 19. Started in 2008 by the United Nations, the day helps raise awareness about Sickle Cell Disease (SCD). Sickle Cell Disease is a global issue and is the most common genetic blood disorder in the world, according to the American Society of Hematology (Al-Jafar). In 2010, I started my blog CleverlyChanging.com to document my parenting journey. My daughter had been recently diagnosed with SCD, I wanted to build a community with parents who support and learn from each other.
Sickle Cell Disease Defined
SCD is a blood disorder caused by the mutation of the Hemoglobin S gene. The mutation affects a person’s red blood cells. Our red blood cells carry oxygen to our body. When a person is suffering from sickle cell disease, the red blood cells can get stuck because of their abnormal shape and cause extreme pain. Patients living with sickle cell can suffer from numerous complications such as Acute Chest Syndrome, severe anemia, stroke, organ damage, ulcers, and more.
The SCD Coloring Book Fulfills a Need
After my daughter was diagnosed with SCD, I didn’t find many children’s books to help me explain to her what was happening inside her body. She had to go to doctor appointments often, and I needed to find a way to help ease her fears. Last year, I started to extend my platform beyond the web, and do more speaking engagements across the United States. After listening to parents express a need to have something tangible to help soothe their children and educate them, I decided to publish The Sickle Coloring Book for Kids.
The Book is a Tool for Kids and Parents
The Sickle Coloring Book for Kids helps simplify terms and empower parents with images that explain what SCD is and the experience that many children living with the disease will face. The images within the book contain diverse people because SCD affects more than just people of African descent. The US Department of Health and Human Services reports that “while the disease is most common among African Americans, other racial and ethnic groups are affected, including Latinos and people of Middle Eastern, Indian, Asian and Mediterranean backgrounds” (HHS- Office Of Minority Health – Sickle Cell Disease).
Parents raising children with SCD now have a coloring book that they can enjoy and learn from for years to come. The Sickle Coloring Book for Kids can be purchased online on Amazon.com. It contains over 60 pages packed with information and illustrations designed as a teaching tool for educators, doctors, and families.
Some ways to celebrate World Sickle Cell Day
World Sickle Cell Day should be a day of celebration and one where people raise awareness about SCD. There are a variety of ways to advocate for patients living with sickle cell disease and their families. Here are a few ideas:
- Blood transfusions are a common treatment for patients with sickle cell disease. Donate blood at your local hospital or at a blood drive to support those with SCD.
- Buy the Sickle Cell Coloring Book for Kids and gift it to a local hospital in your area.
- Learn more about SCD by attending a symposium about sickle cell disease.
- Donate to foundations that support SCD such as sicklecellconsortium.org, mythreesicklers.org, sicklecelldisease.org.
- Purchase a book about sickle cell disease. Here are a few titles to educate kids:
About the Guest Author:
Elle Cole is a mom of twin daughters, one of whom is living with Sickle Cell Anemia. She serves as a health advocate for Sickle Cell Disease and Type 1 Diabetes. She is an ambassador for St. Jude Children’s Research Hospital. And raises awareness about Sickle Cell Disorders to help make the quality of life for people living with genetic disorders and autoimmune diseases better.
Each day thousands of people follow her journey on cleverlychanging.com, Instagram, and Facebook.
Elle is a recipient of a Bronze Congressional Award. She has been featured on NPR, ABC 7, BBC World Service Radio, and as a guest on many podcasts. She is an author, writer, motivational speaker, and social media strategist. CleverlyChanging.com and the CleverlyChanging podcast are a go-to resource on health, wellness, finances, and parenting. She is also a passionate storyteller. She holds a B.A. degree in English and History.
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