Jordin Sparks Personal Sickle Cell Story

BDO: First Jordin, I have to ask you before we get into the Sickle cell stuff topic, you’re a new mommy, a new wife. You have so many things going on and you look amazing, how are you feeling? Jordin Sparks | Singer & Actress, Sickle Cell Warrior: I feel good. Tired. Yeah. Yeah a little bit tired but I feel really good. It’s beautiful. I’ve always loved kids I’ve always loved their energy I love being around them and just you know empowering them and encouraging them. I knew if I ever had the opportunity to be a mom that I would love it. And I really I really do. I adore it. He’s so great and I’m like He’s in New York with Grandma. I want to cuddle up right now and I can’t. Bryana Holcomb | Editor, So what are you doing here?

Jordin Sparks: I’m actually representing Generation S and it’s a really cool program that SCDAA it gets to be a tongue twister from me. I’m so sorry. The SCDAA and Novartis have come together for and so you go to join Gen-S dot com. You can share your story. So basically what I’m doing is I want to help people change the narrative in the face of what sickle cell disease is. You can’t tell by looking at a person if they have it. And I think there are a lot of people that walk around and you don’t know what somebody is going through. But in this case you really don’t know if they’re in pain. You don’t know what’s going on. And my step sister had sickle cell disease she passed earlier this year and after that I was really inspired to talk more about it cause there’s just not as much awareness as there needs to be. And I’m just very happy to be a part of this. That’s why I’m here today to talk about my story my own story of how I’ve dealt with it in being touched by it but also to represent in any way that I can.

BDO: So what was it like for you growing up with your sister having sickle cell? Was that something that? You said a lot of people don’t know they can’t see it. Was that something that you discussed in your household or how did that work?

Jordin Sparks: So it’s a little bit different. She was my stepsister so I actually didn’t grow up with her. My mom got remarried about four years ago. So our relationship was very new and because of just how we lived apart from each other we did live in the same place. I only got to speak with her face time but in those moments that I did you know there were days when she was very vibrant and she was she was 16 years old. It is she is very vibrant and she was OK and she was good and she had lots of energy. And there were those times when I could really tell that she was hurting and she was in pain and it like just speaking was exhausting for her. And I. Just sorry seeing her in that pain when she was so young and you just couldn’t tell by looking at her that she had something like that. It really affected me. You know it makes my heart hurt just thinking about it now and you know it affects so many different ages and men and women alike. And I wanted to know more. I didn’t know a lot when I found out that she had it. And then I started learning more and I was like I want to do something more than just that and there needs to be more done. And so this opportunity came along to be able to represent this and I’m not only doing it in honor of her but I’m doing it to educate myself and others too.

BDO: Can you tell us more about what Jordin was is explaining why there’s pain? Why? What are the crises that we see when someone is to work through it? Someone had sickle cell disease.

Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: So I think one of the first things we want to sort of educate the public about is how relatively common sickle cell disease is even though it’s considered to be a rare disease and actually affects probably more than 100,000 Americans. And most people are living with it silently because as Jordin said you don’t know that the person is experiencing pain and as you put it the most common symptom associated with having sickle cell disease are these episodes of severe excruciating bodily pain that can happen at any moment you can feeling fine at one moment the next moment you have severe pain is debilitating and it might land you in the hospital or…