…there was an organization nationally that is advocating for people living with sickle cell disease. So for me it’s personal. And it’s also because I feel a deep commitment to do this on behalf of all the families and all the individuals who feel like they’re there they’re living in a hopeless hopelessness and darkness and they have no one to fight for them. And I want them to know we’re fighting for them every day. And we believe in them and that they have people that really support.
BDO: I think. So. My next question would be going in that in that route with for all of you. What do you think is the best way for someone to support a loved one or a friend family member with sickle cell?
Jordin Sparks: I think in my experience that I had. It’s hard when people don’t understand it because they’re not around it. I didn’t know myself how to comfort my stepdad or Brianna. And that was her name in general just because I didn’t know like I didn’t know how it felt. I. Never been in the hospital with somebody who had it and I think that understanding needs to be there just to just you can be there and just be understanding that something is happening. You don’t have to be you know educated in every single thing but to be able to lend an ear and to be understanding. I think that counts for a lot as well just because you can’t tell by looking at somebody again if they haven’t. And that’s kind of hard to understand when you’re like well my knee hurts. You know you see the bruise on my knee you know it hurts but you can’t see the crisis that’s going on you can’t see the blood. You know not being able to get to certain organs and so just being there for somebody in general is and I’m sure there’s other things as well. But I from my experience I just wanted to say it like I’m there for you. You know I’m there. I know that you’re hurting. I might not understand it all the way but I know that it’s real like acknowledging that it’s real I think it’s is huge.
Beverly Francis-Gibson, M.A. | President &CEO, Sickle Cell Disease Association of America: Yes, definitely. I would also add one of the main things one of my main agendas says I’ve joined SCDAA is to also increase awareness about the disease and a lot of the work that we’re doing generation as project initiatives that we’re doing with black doctors, Ebony. The goal is to raise awareness about the disease. Again we have to get people talking about this because there’s so many people dying needlessly because no one is talking about this. And like I said my whole family did not talk about this right. So if we could expand a knowledge based on the information that’s out there about sickle cell disease encourage people to get tested. Encourage people to seek help because they’re also people refusing obvious reasons or other reasons to go to the hospital when they’re in crisis. So encouraging and getting all that information out there so people have it when they need it is a big part of it.
Jordin Sparks: I’m sorry you mentioned join Gen-S and that’s the cool thing that I’m actually part of. Generation S so basically we’re encouraging people from kids to adults to share their stories so that we can change the face of it like oh somebody that you wouldn’t think looks like they had it and you can go on join Gen X not common you can share your story please go share your story if you have it and maybe it’s like her family and you haven’t talked about it this is your opportunity to be able to get in front of the camera you don’t have to be feel judged or whatever your hesitations are but you can share your story and get it out there because the more people that share it the more understanding comes out the more that people go get help.
Beverly Francis-Gibson, M.A. |President & CEO, Sickle Cell Disease Association of America: Having a face to the disease also helps when we’re fighting for legislation so that people recognize that it’s something that impacts everyone and that’s important too.
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: I would just add to piggyback on what you said that what really differentiates this disease from any other chronic disease states is that it’s intermittently disabling. OK. So like I said earlier someone can be feeling fine one day and that be a severe pain in the hospital the next day for a week or sometimes a month or longer. And when you’re a child what does that mean that means that you’re missing school when you’re a teenager. That means that you’re missing graduation and prom when you’re older it means that you’re away from your children for a little while. And I think that the village that you build around you is very important so people understand that you’re going to get back on your feet when you get home from the hospital or when you recover from all these crises. But it’s going to take time. I can’t tell you how many moms who are my patients with sickle cell disease that when they go into the hospital Grandma somebody will take care of the baby and then when they’re discharged when she’s discharged and goes home they plop the baby right back in her lap like no you’ve got to give her some time. Just understand that you know.
Jordin Sparks: You know what it’s really crazy because I still don’t think I’ve fully been able to have that moment just because it all happened at the same time and I was also in the end stages of my pregnancy. So I had to kind of put that away in a box and focus on not being stressed for the birth that was coming. But I do think for me it all happening. It’s crazy as you get older it happens more and more and I know I was told that when I was when I was young you know you’ll see when you’re older you know some people might not make it with you. And I wasn’t expecting that to happen. My cousin my two really close friends and then my stepsister all passed within two weeks of each other and it was it was really hard and it still is and there are moments when I I’ll just tear up out of nowhere and actually being a part of this has been a sort of cathartic experience for me to help acknowledge that she did pass and also to deal with the grief. I was on a phone call talking about this event and I got really choked up because she was 16. She was young and vibrant and she actually was one of the ones that experienced being out of school for like three weeks out of the month. You know she was in the hospital for a very long time for her entire life that she was here. And it’s hard to grasp that it’s really hard to grasp that she was able to experience a lot of things and then in turn that made her very shy. She wasn’t socially awkward but she was shy. And you know I just I wish I could have taken her out to just you know have fun and just have one of those good days and my mom and stepdad actually took her to you know she was a model for a day and you know they took her shopping and she got you know those shoes and the whole thing. And it was it was amazing but I’m still dealing with it and I think that that is the most honest answer that I can I can give you because it’s everybody deals with grief in their own way.
BDO: I have a question before we go back live with you saying she was in the hospital three weeks out of the month and I’m sure there are other patients that are like that. Are there resources or anything in place for patients as far as helping to pay these bills hoping to get back on their feet if they don’t have a support system at home? What can they do and where can they look?
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: So I think to answer that you should go to your state. States usually have protections for children to ensure that they get the education that they need to regardless of whether or not they have a disability. So there are a lot of state aid programs and educational programs that can be put in place to ensure that perhaps that young child needs to be taught or tutored either in the hospital or at home while they’re recovering. So I would start with your state wherever you live and see what resources are there and then there’s there are always your community-based organizations as Beverly says. SCDAA has 41 chapters across the country and they are a valuable resource to be able to let you know on the ground in your particular community what is available.
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: I think that having been a mother to a newborn myself it’s an overwhelming time. Yes, there’s a lot of information being thrown at you even if you have a healthy baby with no diagnosis. I think what the family can do is go to the doctors’ visits with the baby and the mom because mom is not going to be able to retain all the information that she gets during that 30 minute or 60-minute doctor’s visit go in there with a notepad and write down what the doctor says. Have and formulate questions ahead of time and be that resource. You also have to understand that taking care of a child living with sickle cell disease or any chronic disease is a full-time job in many ways. And there can be sometimes caregiver burnout and so even if given the most well-intentioned it happened yes you know so giving the mom time to herself or the dad time to himself is really important as well. So that’s what that’s what I would say to answer that question.
Jordin Sparks: And I think as well being I’m just being a mom like you said this is overwhelming. You don’t have to feel guilty for feeling overwhelmed like it is so much because I’m still a little overwhelmed. But the emotional impacts as well. She’s really not going to remember any of that you’re right because I said I remember sitting there and they were telling me about the newborn screening and I just was weeping because they were trying to get the little samples and he was wailing and I was weeping and I had no idea what she said it went right over my head so. Don’t feel guilty just experience your emotions as they come. Like let them come let me come in.
Beverly Francis-Gibson, M.A. | President & CEO, Sickle Cell Disease Association of America: I would also encourage her to wherever she’s living. Reach out to resources in her community and if not call us at SCDAA because then we can connect her based on where she lives to that community-based organization in her community because there are lots of resources out there that many people don’t know about.
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: One more parts of that I think it’s important to know that most babies born in this country with sickle cell disease now live into adulthood and well beyond. It’s very different from 10 20 30 years ago when most kids did not get to the age of 18. Most do and people are living into their 30s 40s 50s 60s 70s and beyond. And it’s all about getting the proper care and getting the proper education. So don’t think of this as anything other than something you didn’t expect but you’re just going to manage it and it’s a chronic disease and it’s going to be well managed.
Jordin Sparks: I would say to go to join Gen S dot com right now and specifically because it’s up right now and you can go and you literally just enter your name and age. You click it you share your story and then it’s put up there on the site for everybody to see. Everybody can view your story and it can be heard. That’s the great thing about this is what we want is for your story to be heard. We want it to be shared and be known. You can be crying in your story. You can be happy in your story. You can do it however you would like. It’s up to you really it can be as short or as long as you want. I think so I would say to do that and also to not be afraid to talk about it to people that you trust. I think it takes a village in raising a kid it takes a village and helping somebody understand what they’re going through and deal with something. So if you trust somebody tell them to. If you haven’t spoken about it and I think as well to reach out to the resources too and see how you can get involved in your local chapter and how you can influence your area because it starts with only starts with one starts with one and then the ripple effect happens. So I think that’s why I would say.
Beverly Francis-Gibson, M.A. | President & CEO, Sickle Cell Disease Association of America: I would agree.
BDO: Thank you ladies for joining us. Guys always if you still have questions or comments please leave them in the comments section that we will get back to you on them. Until next time. We thank you for joining us. Thank you.