domingo, 4 de octubre de 2020

What is Sickle Cell Disease? | CDC | Sickle Cell Awareness Month 2020 - Week 5: SCD Stories

What is Sickle Cell Disease? | CDC

Making a Difference Across the Lifespan

Sickle cell disease (SCD) is a group of inherited blood disorders that can cause red blood cells to become hard and sticky, blocking blood and oxygen from reaching all parts of the body. This blockage can lead to severe pain (also known as pain crises), infections, stroke, and other serious health problems. In observance of Sickle Cell Awareness Month, the Centers for Disease Control and Prevention (CDC) has been sending a digital newsletter each week throughout September to raise awareness about various topics in SCD and highlight helpful resources. This final week, we’re sharing stories from people living with SCD.



Meet Just a Few of the Many Faces of SCD



a photo of Lametra Scott and her son Rickey





Lametra Scott (and her son Rickey)

In September 2012, Lametra Scott gave birth to a baby boy. She named him Rickey. Before his birth, Lametra had no idea that she carried the sickle cell trait (SCT). It wasn’t until one of her prenatal visits that her doctor told her that she and her son’s father both had SCT and that their son would have a 25% (or 1 in 4) chance of having sickle cell disease (SCD). When Rickey was born, his primary care doctor tested him for SCD; Lametra was comforted to learn that he did not have the disease. Instead, she was told that he carried the trait for SCD just like his parents. She and her son’s father immediately breathed a sigh of relief. However, this comforting feeling did not last long. Read the rest of Lametra’s story to find out why.


A picture of Aaron Washington





Aaron Washington



Having sickle cell disease nearly killed Aaron. She experienced one devastating medical complication after another. She had her first episode of pain, called a sickle cell crisis, at 8 months old and her first stroke at 8 years old. Her doctors told her she would not live to see her 13th birthday. Today at age 25, thanks to a successful bone marrow transplant, Aaron is defying all the odds. Read her inspirational story.


A picture of Mimi





Mimi

Mimi’s genetic (inherited) blood disorder comes as a surprise to many healthcare providers when they first meet her because of one detail: she’s not African American. “When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle cell? We need to look into this,’” says Mimi, a 37-year-old lawyer and mom of four. Mimi’s medical history is similar to that of many individuals with sickle cell disease: she has experienced severe pain since a young age, frequently sought care in the emergency department, and has received numerous blood transfusions (when healthy blood is given to a patient through one of their blood vessels). Read Mimi’s story.




a photo of Lance Jasper Jones



Lance Jasper Jones
Lance Jasper Jones is 31 years old, engaged to be married, in graduate school pursuing a master’s degree in clinical psychology, and a talented musician and music producer. He is also living with sickle cell disease (SCD). Throughout his life, Lance has had numerous health complications from SCD. He has been hospitalized more times than he can count. The doctors did not expect him to live into adulthood. In middle school, Lance developed avascular necrosis (AVN), and was confined to a wheelchair for 2 years. AVN is a painful condition in which there is a loss of blood and oxygen to the bone, causing tissue in the joints to die. As a result of this complication, Lance will need to have a hip replacement before his 32nd birthday. Read more of Lance’s story.


Read other stories of people living with SCD.



Want to learn more about SCD? Visit our SCD website.



This concludes our newsletter series for Sickle Cell Awareness Month. Share our resources with friends, family, and colleagues to help raise awareness about SCD!



For the latest news and updates, follow us on Twitter @CDC_NCBDDD.

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