Elle Cole, Sickle Cell Awareness Advocate joins us for World Sickle Cell Day

 

We all know that June 19th is a special day for its connection to Juneteenth, otherwise known as Emancipation Day and Freedom Day, but here’s another special reason to honor today: World Sickle Cell Awareness Day. 

Sickle Cell Disease (SCD) is a complex and ever-mutating set of disorders caused by the sickle cell trait, which changes the shape of the body’s red blood cells from a “donut” shape to a “banana or crescent moon,” causing staunching of the blood flow through the body and to vital organs that help us function properly. Millions of people worldwide suffer from the most common inherited blood disorder that negatively affects individuals’ health in a myriad of ways including chronic pain, retinal damage, decreased energy and sometimes, even in death. The most known form of the disorder, sickle cell anemia (SCA), affects approximately one in three Black babies. 

While it’s the most common inherited blood disorder that impacts 5% of the world’s population according to the World Health Organization (WHO), the disorder especially lives in the communities where ancestors came from sub-Saharan African countries, Spanish-speaking regions in the Western Hemisphere, Saudi Arabia and India.  

The disease that we’re still learning about is has troubled the world and has been passed down generationally in those with African ancestry as a much larger rate than other ethnicities. Today, the country with the highest amount of SCD cases is Nigeria, followed by India and the Democratic Republic of Congo. Together, they hold 90% of the confirmed cases worldwide. In the US, there are about 100,000 people living with the disease, and still, those who are Black or African-American suffer at a much higher rate than their counterparts.  

Here are the facts: 

  • According to the CDC, Sickle Cell Disease affects those of African Ancestry at a disproportionate rate compared to other ethnicities: 1 in every 365 Black births. 
  • About 1 in 13 Black or African-American babies are born with the sickle cell trait (SCT) 

We met with this advocate... 

Elle Cole of Cleverly Changing, advocate for Sickle Cell Disorder and Type 1 Diabetes for World Sickle Cell Day

In honor of World Sickle Cell Awareness Day, we chatted with Elle Cole, the dedicated health advocate for Sickle Cell Disease and Type 1 Diabetes. Her journey to advocacy began when she and her husband learned, during their pregnancy with twin girls, that they both had the sickle cell trait and that each of their girls would have a 25% chance of having the disease. Since then, she has continued to learn and teach others about the Sickle Cell Disorders and helps to improve the quality of life for people living with genetic disorders and autoimmune diseases. The Sickle Cell Anemia diagnosis of one of her girls, has influenced her passionate work, her family’s decision for homeschooling and more. Currently, Elle is an ambassador for St. Jude’s Children’s Research Hospital, in partnership with Children’s National Hospital in Washington, DC and an author of three books to help children and families understand SCD in simple ways.  

In her interview with African Ancestry, she shared her journey from learning she and her husband unknowingly had the trait, to learning that her daughter has SCA, to becoming a full-time advocate, teaching others – especially in Black communities – about the disease.  

How can you celebrate World Sickle Cell Day?

Elle shared some great ways that you can honor World Sickle Cell Day. 

The Sickle Cell Community Consortium is having a 24-hour event to immerse people into learning about the disease. She says it's going to be a fun and lively event featuring educational resources and more.

World Sickle Cell Day event on June 19, 2021

Want to join in? Click to register! 

Today, at 2 PM (EST), she will be participating at a Sickle Cell event hosted by Northwestern Mutual, where they'll be doing a mini camp featuring NFL player, Ryan Clark. The mini camp is all about fun and educating kids and their families about the disease. Attendees also get a free gift bag, including Elle's new book that drops today. 

We Hope You Can Join The Fun - Mini Camp for Sickle Cell Awareness with NFL Player, Ryan Clark

She also suggests donating blood, today and always. Those with Sickle Cell Disorders often need transfusions. The pandemic slowed down the usual amount of blood donations, but there's no shortage of people who could still use it.

Interested in attending? Register here!

Where can you follow Elle and purchase her books?

You can find her using @CleverlyChanging on Instagram and Facebook. On Twitter, you can reach her here.

Looking to hear more of her story? Check out her podcast here!

Books can be purchased directly through her website www.CleverlyChanging.com or through Amazon here.

If you're looking to have Elle speak at your event or to purchase books in bulk for an event or collection, visit her website: www.CleverlyChanging.com.

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