(BPT) - Despite being one of the most common genetic disorders in the world, patients with sickle cell disease frequently live their lives in the shadows — their voices going unheard, their condition may often go undertreated or ignored. A new public service announcement (PSA) campaign featuring Grammy®-nominated singer, film and Broadway star, Jordin Sparks, and five people touched by the disease, invites the public to get involved and help patients through understanding and support.
Last year, Sparks helped launch “Generation S” — a national sickle cell disease storytelling project sponsored by Novartis that encourages people touched by the disease to break their silence about the true impact of sickle cell disease. Since then, more than 750 stories about experiencing life with sickle cell disease have been submitted to JoinGenS.com.
Although sickle cell disease affects roughly 100,000 Americans, it has gone unseen by many. The general public may not understand the impact and burden of sickle cell disease. The stigma associated with the disease has left many patients under-treated and lost in the health care system.
Despite their challenges, the PSA highlights the resiliency of people touched by sickle cell disease, who are fighting the disease and starting foundations in honor of family members.
Here are some ways to join Jordin Sparks and the storytellers to help educate those who may interact with people living with sickle cell disease at work or in their personal lives:
Stay informed — What is sickle cell disease?
Sickle cell disease is a genetic blood disorder that affects the shape of red blood cells and makes blood cells stickier than usual. This can cause blockages in blood vessels and when the blood flow slows or gets blocked, there can be more health risks over time, like organ damage and organ failure and other long-term health complications.
It also can impact family and friends of those carrying the disease in profound ways. While one patient describes her condition as feeling like “shattered glass moving through my veins,” others share stories of watching loved ones struggle for years without being able to ease their suffering.
Communicate and interact
By sharing the PSA, you can help the public understand the burden and impact of the condition and the real life stories of those living with sickle cell disease.
The PSA is supported by Sickle Cell Disease Association of America (SCDAA), Sickle Cell 101, Sick Cells, the Sickle Cell Community Consortium (SCCC) and Bold Lips for Sickle Cell — all partners to Novartis’s “Generation S.” Interact with the community and view additional stories featured in the “Generation S” mosaic on the JoinGenS.com website.
Share your story
For Jordin Sparks, sickle cell disease is personal. She lost her young stepsister to the disease in 2018.
“Many people still don’t know the impact sickle cell disease has on people living with it, and their families and friends,” Sparks said. “I hope this PSA will help change our mindset regarding sickle cell and I am proud to lend my voice to shine a light on these stories.”
To learn more and share your story, visit www.JoinGenS.com.