Sickle Cell Disease (SCD) is a global health crisis all over the world. Therefore, in 2008, the United Nations declared that June 19 would be World Sickle Cell Day. According to the SCDCoalition.org “SCD continues to be a major global public health issue. It remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa and India, where an estimated 50–90 percent of infants born with SCD will die before their fifth birthday” (“Sickle Cell Disease Coalition”). Growing up in a predominantly Black church and community, surprisingly, I heard little about sickle cell disease. It wasn’t until I learned that my daughter had Sickle Cell Disease that I started to engage in educational conversations about how and how the disease is prevalent.
What is Sickle Cell Disease?
SCD is a genetic blood disorder that people are born with. Children inherit abnormal hemoglobin from their parents and the disease cause an immense amount of pain and could lead to organ failure and other major problems. Although, I am highlighting would could happen in a person living with SCD it is not a death sentence here in the US. Thankfully, people families can be helpful that there are treatments available to help them manage.
What are ways that people can celebrate World Sickle Cell Day?
- Wear red in honor of the blood disorder to raise awareness
- Visit your doctor to find out your sickle cell trait status.
- Learn more about the disease through a webinar or educational symposium.
- Donate blood, many SCD patients are in need of regular blood transfusions.
- Donate Stem Cells or bone marrow through a program at Be The Match: join.bethematch.org/SC3Carley or Text SC3Carley to 61474
- Join a virtual sickle cell walk-a-thon
- Follow the #WorldSickleCellDay Hashtag on Twitter to find out in real time what people are talking about as it relates to Sickle Cell.
- Contact one of your state SCD foundations (find one here) to see what type of donations are needed.
- Donate to research initiatives at St. Jude Children’s Research Hospital.
- Donate (to SCD foundation) gas gift cards are food gift cards for families who have to be in the hospital. A few are listed below.
- Start an SCD fundraiser. One of the issues that SCD faces is that it is underfunded. If you have an employer that will match funds raise as much as you can and allow your company to match the donation for a SCD focused nonprofit.
- Share a fact about SCD on your social media account or in your stories.
- Volunteer for a Sickle Cell Foundation. Often families with someone living with SCD love to help, but sometimes they can get over-extended and stressed with health related issues. Therefore many foundations could use help from dedicated supporters.
- Follow SCD foundations on Social Media to learn more about their initiatives
- Help fund a summer camp membership for a child living with SCD
- Listen to Sickle Cell Patients stories. Search YouTube and you can find several first-hand videos or documentaries about sickle cell.
- Purchase Sickle Cell Awareness merchandise.
- Donate to reputable SCD foundation such as:
- My Three Sicklers (MTS) Sickle Cell Foundation – mythreesicklers.org
- Sickle Cell Community Consortium – sicklecellconsortium.org
- William E. Proudford Fund Inc. – wepsicklecell.org
- As One Foundation – asonefoundation.org
- Sickle Cell Disease Association of America – sicklecelldisease.org
- Read a book about SCD. Here are a few children’s books that are amazing:
“Sickle Cell Disease Coalition”. Sickle Cell Disease Coalition, 2020, http://www.scdcoalition.org/priorities/global.html. Accessed 19 June 2020.