Sickle cell disease is a genetic blood disorder that affects approximately 100,000 people in the United States.¹ The condition proportionately impacts the African-American community.

 

Symptoms can include: episodes of pain, painful swelling of hands and feet, frequent infections, vision problems, and more.²  The disease can disrupt the lives of patients and their loved ones without warning, making it difficult to engage in even the simplest day-to-day activities.

 

Grammy-nominated singer and actress Jordin Sparks lost her 16-year old stepsister, Bryanna, to sickle cell disease, and is now appearing with others – (who, like her, have lost loved ones to the disease) in a new PSA to help bring more awareness to this very painful and devastating condition.

 

 

Sparks has been at the forefront of the “Generation S” movement – a national sickle cell storytelling project designed to encourage the sickle cell disease community to break their silence about the impact and burden of the disease.

 

“Generation S” showcases stories that have gone untold until now. In the PSA, featured storytellers share how sickle cell disease directly impacted their lives.

 

Stories include those of young men and women forced to miss important milestones in their lives due to the impact of sickle cell disease. One storyteller recounts hearing her mom describe the pain associated with a pain crisis as, “so brutal that I wanted them to cut off my arm or leg,” and another one set a hospital record low for hemoglobin level.

 

The PSA is the newest chapter in the Novartis-sponsored “Generation S” project, which launched in September 2018 in partnership with the Sickle Cell Disease Association of America (SCDAA). The more than 750 stories submitted through the JoinGenS.com website by people touched by sickle cell disease highlighted the need to raise awareness about the burden of disease that patients face. Sparks and five storytellers selected by the “Generation S” partners stepped up to meet the challenge by producing this PSA to help the general public, and those who may interact with people living with sickle cell disease at work or in their personal lives, understand the impact of the condition.

 

 

In addition, Generation S offers a mobile support feature called iText GenS that can remind you when you have a doctor appointment, give you tips for managing your condition, and help you understand more about the science behind sickle cell disease. Caregivers can use the iText GenS service to help loved ones manage their life with sickle cell disease.

 

Jordin along with Dr. Biree Andemariam, Director of the New England Sickle Cell Institute and Chief Medical Officer on the board of directors for the SCDAA, joined me to Share more about Generation S and why more awareness of sickle cell disease is so important.

 

 

Makeba: Jordin, tell us how and why you got involved in the Generation S sickle-cell awareness project and how that connects to your own personal health journey.

 

Jordin Sparks: Well, I had already a couple years ago been involved with raising awareness in different ways for sickle-cell disease. My mom got remarried a few years ago and with that came new siblings and my youngest step-sibling, Bri, had sickle-cell disease and unfortunately, she succumbed to the disease about a year and a half ago, but she inspired me so much and she was such a fighter and she had a smile on her face and had such a sweet spirit even though she went through the debilitating pain that sickle-cell can cause.

And for me, I do this in honor of her and I hope that she’s proud and I also do this in honor of my step-dad James. But I wanted to be a part of this, because I think the conversation needs to continue to be had. I know there’s conversations going on, but we don’t talk about sickle-cell disease as much as we should. As well as telling people that they should know their trait status and also being able to be aware of others that have it, because you can’t tell that they have it just by looking at them.

So, to have compassion and to show empathy toward people when they say, “Hey, I’m in a lot of pain right now. I might not be able to make it to x, y, and z.” To be able to do that, I think, when we can exhibit those things, we can change the atmosphere and open up more lanes of conversation to be had.

 

 

Makeba: Thank you so much for sharing your personal story with us.

 

Jordin: Absolutely.

 

Makeba: Doctor, what is the goal of the campaign and how can it benefit those who are living with sickle-cell disease?

 

Dr. Andemariam: So, the goal is to let people know a bit about sickle cell disease so they understand that 100,000 Americans live with it and millions globally have it. It’s something you’re born with, it’s not something you catch. It affects the red blood cells. So, instead of the cells and the blood being able to circulate normally, they are very sticky in somebody with sickle-cell disease. They get stuck in circulation periodically and those sticky cells create blockages and those blockages can cause pain.

And so, there are these periodic episodes of what we call pain crises that come out of nowhere. We don’t exactly know the trigger. And individuals with sickle-cell disease live every day wondering if they’re going to have one of these pain episodes and they’re severe, sometimes they have to stay home. They can’t go to work or school. If they’re bad enough, they have to go to the hospital or the emergency room to be evaluated. It disrupts daily lives and I think part of this campaign’s goal is to tell people the stories, but also give people living with sickle-cell disease a place to share their stories and to understand that they are not alone.

 

Jordin: Yeah.

 

 

Makeba: What advice would you two personally like to give to those who currently are caregivers for someone who has have sickle-cell disease?

 

Jordin: I think it’s different … I can only speak to my experience that I’ve gone through with my step sister and my step dad, but for me, I feel like being able to empathetic and compassionate and to listen, to just be there for somebody, I think is a really huge part of it. They feel very misunderstood sometimes, because they can go seek treatment and somebody even in the medical field cannot understand it and say, “Well, I don’t know how to treat you.”

They could be in a severe amount of pain, so I think to be able to listen to people and to just be there for them is really huge. As well as to be able to provide information for those that don’t know what sickle-cell disease is. So, I feel like those things are very, very important.

 

Dr. Andemariam: So, the only other thing I would say in terms of people out there living with sickle-cell disease is if you go and you listen to the stories, you can see that there are lots of people living and thriving with sickle cell …

 

Jordin: Absolutely

 

Dr. Andemariam: … and you can and should be one of them.

 

 

To see the hundreds of other stories of people living with sickle cell disease that are featured in a beautiful mosaic, visit JoinGenS.com.

 

For more information and resources on sickle cell disease, visit SickleCellDisease.org.

 

To use the iText GenS service, text the word ‘JOIN’ to 77087 to get started.

 

 

 

 

Jordin Sparks Opens Up About Losing Stepsister to Sickle Cell Disease

1. American Society of Hematology. State of sickle cell disease 2016 report. Available from: http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf.Accessed on January 14, 2019.

2. Mayo Clinic. Sickle cell anemia – Symptoms and causes. Available from: https://www.mayoclinic.org › symptoms-causes › syc-20355876 . AccessedonSeptember 25, 2019.

 

Jordin Sparks Opens Up About Losing Stepsister to Sickle Cell Disease