Understanding Sickle Cell Disease

Episode 3: Understanding Sickle Cell Disease

Sickle cell disease is a blood disorder that affects patients physically, emotionally, and socially. Even though sickle cell research and treatment have improved over the last several years, many are still learning about how this condition impacts the body and daily life.

In this episode, parents Audrey Davis and Quenton Mullins talk with Tekeima Townsend-Billups and Jerlym Porter about going through sickle cell disease with their daughters Courtney and Nia. They discuss the invisible and unpredictable nature of the disease, dealing with pain crises, the importance of therapy, and advocating for their children.

A special thank you our host, Tekeima Townsend-Billups, senior staff chaplain at St. Jude; our expert, Jerlym Porter, associate member of the St. Jude faculty in Psychology and Biobehavioral Sciences; and parents Audrey Davis and Quenton Mullins.

Learn more about Courtney and Nia’s diagnosis of sickle cell disease and the transition to adult health care on Together by St. Jude™.

The statistics that Quenton mentions on sickle cell disease in the U.S. can be found on the CDC’s website.

Discover more insights into Nia’s journey on the Together blog.

This episode was recorded May 15, 2025.

St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode Transcript

Narrator (00:02) 
A child's diagnosis of cancer or another serious disease is difficult. Families, guardians, and loved ones experience a range of emotions and often need support related to their child's diagnosis and treatment. St. Jude Children’s Research Hospital brings you Caregivers SHARE, a St. Jude Podcast. SHARE stands for support, honor, advise, reflect, encourage. 

In this series, you'll hear stories and insights directly from the experiences of St. Jude families and care providers. 

Tekeima Townsend-Billups (00:37) 
Living with sickle cell disease is tough, not just on the body, but also on your feelings and relationships. I'm Tekeima Townsend-Billups, Senior Staff Chaplain at St. Jude Children's Research Hospital. 

In this episode of Caregivers SHARE, I'm talking with caregivers Audrey Davis and Quenton Mullins, along with sickle cell expert Jerlym Porter, about the physical and emotional aspects of sickle cell disease. 

Jerlym, will you please introduce yourself? 

Jerlym Porter (01:09) 
Hi, I'm Jerlym Porter, associate member of the St. Jude faculty in the Department of Psychology and Biobehavioral Sciences. 

This topic is important to me because I study how teens with sickle cell disease move from pediatric doctors to adult doctors and how their feelings, thoughts, and social lives affect their health. 

Sickle cell disease is a blood disorder that you are born with. Normally, red blood cells are round and move easily through your body, but with sickle cell disease, some red blood cells are shaped like a banana or a crescent. These sickle-shaped cells can get stuck and block blood flow. This can cause pain, tiredness, and other health problems that can last for a patient's whole life. 

A lot of people don't know much about sickle cell disease, or how it affects children, teens, young adults, and adults. I'm excited to talk with you about what it's like and how it impacts you and your families. 

Tekeima (02:06) 
Thank you, Jerlym. Audrey and Quenton, will you please introduce yourselves as well and tell us a little bit about your journeys? 

Audrey Davis (02:14) 
I'm Audrey Davis, and my daughter, Courtney Davis, has SS sickle cell disease. I also have a daughter, Jenny, who has sickle cell trait. 

Courtney was actually diagnosed in utero, so we found out when I was about five months pregnant that she would be born with SS sickle cell disease. For us, this was very concerning and almost a death sentence of such because of the fact that our closest relationship with sickle cell disease was my nephew, who unfortunately passed due to the complications of sickle cell disease before he turned three. 

Courtney is now 24 years old, a young adult, still learning the transitioning into adult care with sickle cell disease. 

Quenton Mullins (03:07) 
My name is Quenton Mullins and my daughter’s name is Nia Mullins. And she was diagnosed with sickle cell SS as well. 

At about two weeks of age, I remember just, you know, looking at my wife as she received a phone call. And she had this blank stare and I knew something wasn't right. And that's when we found out that Nia was diagnosed. 

She is 18 now. She's going to graduate from high school next week. And I always say that Nia has two birth dates. And so the second birthday for her is February… February the 10th of 2022 is when she received her bone marrow transplant. 

Now she's sickle cell free. So this is another day that we celebrate. But also another day that keeps us thinking about what we can do to help others that are facing the same crisis as we did. 

Tekeima (04:01) 
Thank you. I think we can dive right in because I'm just eager to know, what is it like trying to help other people understand sickle cell disease and how it affects your child? 

Audrey (04:16) 
Because sickle cell is a disease that doesn't always have visible side effects. It has many, many, many internal side effects. It's really hard sometimes to help others understand what is sickle cell disease. 

When we tell them that it is a blood disorder, as Jerlym explained earlier, they don't see how a blood disorder can cause all of the complications that are at risk with sickle cell patients. So I've tried to explain it to them in a very generalized way. Anywhere that your blood flows can be impacted by sickle cell. 

The most common side effect, of course, is pain crisis. I've never experienced a pain crisis, but I've had adults explain it to me, especially when Courtney was very young and I couldn't really get the gist. And when they talked about the severity of the pain crisis, it made me cry. I would cry along with her when she was crying. 

But it's really, really difficult, you know, when you talk about the risk of strokes and when you talk about the complications with infections and the spleen and all, they begin to think, whoa, you know, most people have no understanding of all of the different complications that come with the disease. 

So when you ask, what's it like? It's just almost impossible to get them to really understand the full gamut of concerns related to sickle cell. 

Quenton (05:51) 
Yeah, Audrey, you're exactly right. Because and I always say it's like... You know, I speak English and a little bit of Spanish. And if you're talking to someone that doesn't speak any of those languages and you're trying to explain to them what you're trying to say, it's kind of similar in a sense. 

And so you're trying to use these nonverbal cues to kind of say, hey, this is what it feels like. This is what it is. But it's still a disconnect. 

And then to your point, too, my daughter would explain to me that one of the feelings that she can kind of equate to is when you get real cold, and all of a sudden you get real hot again, and it feels like these needle pricks are just sticking you all over. And so that was one of the best explanations she gave to me for me to be able to understand some of what she was going through. 

Audrey (06:34) 
And the other issue with helping people understand sickle cell is the variations of severity. You know, you may go two years if you're blessed without any complications. That was never our experience. 

We've never seemed to have made it a year without some type of complication. But you would have, especially when they're school age, a kid is at school today running and jumping on the playground, appearing as healthy as can be. And then for a week, they're out of school because they're inpatient and all types of crisis. 

And that's hard for others to understand. They're thinking, wait a minute, she was just jumping on the playground yesterday. What do you mean she went to the hospital last night and she's still there. 

Tekeima (07:23) 
That is quite interesting. And listening to your responses makes me think about even my own experience with thinking about sickle cell disease, because before I started working at St. Jude, I didn't know much about it. 

It was only when I started working here that I began to learn things. And as I learned things, I discovered also that it can be categorized as an invisible illness because people don't see the things that sickle cell patients are going through. They don't see all of the things that they're experiencing. And it seems that it could lead to a bit of frustration. 

Jerlym (08:10) 
What is also challenging about sickle cell disease is the unpredictable nature of the disease and how you highlighted, Audrey, about how one day your child is running, jumping, having fun, but then the next moment in excruciating pain. 

And so I think a lot of times people don't understand the disease and how it fluctuates and how it's very unpredictable. 

Quenton (08:39) 
Absolutely. And unpredictability increases the chances of anxiety, both for the patients suffering from sickle cell and the caregivers around that patient. So good point. 

Audrey (08:49) 
I will say probably the most frustrating piece that we've experienced with people not understanding sickle cell disease is when we have encountered health care workers that don't understand the disease. 

You have those that, of course, are concerned about, well, how do I know that the pain is at that level? Or how do I know they're in that crisis? And some just truly don't know enough about sickle cell disease to really be able to relate to what a patient is going through. 

And that's a whole different level of frustration. 

Tekeima (09:29) 
I was just thinking about how layered that could be. If you are already suffering and you have to prove that you're suffering and there's a delay in getting the response you need. Parents are managing quite a bit with that. 

I'm wondering, along with supporting your child who has sickle cell disease, what is it like with the entire family? How does this impact your families? 

Audrey (10:05) 
Given I already had a daughter who was three when Courtney was diagnosed in utero and this whole focus became about her health, as she grew older, that definitely brought about… you know, some balance that we didn't always fall on the right side of that line. 

Because immediately we could have plans, and we just talked about the unpredictability of sickle cell. Those plans could change, you know, at the drop of a dime. And when you have a child that's 9, 10, 11, they don't quite understand as much as they love their sibling why things change so quickly. 

And they almost become like those that don't understand why the child was jumping on the playground yesterday. Because that's just natural instinct for a child, even though they totally love their sibling, to want whatever that wonderful, fun plan to go forth. 

We probably experienced that most traveling. We're a little hard-headed, and I don't think it totally gets through our heads that flying, once again, a whole other situation, the elevation brought on a crisis. And quite often when traveling, we dealt with illnesses. And it took a long time to kind of find how we would properly prepare for that. 

And so, yeah, it definitely, definitely impacted the entire family. 

Quenton (11:42) 
And just to add on to that, and this is where, again, I just throw in the psychology part. Just because, you know, for us, you know, sickle cell disease does not just impact that patient. It impacts everybody in the household. 

And Nia had two other siblings. And, you know, generally a sickle cell patient has a 504 plan that helps them in school. But oftentimes they're up at night, they're in pain. Sometimes they scream out. And sometimes they run and knock on the door to a sibling for help because they're the closest person nearby. 

And those siblings are up all night long, right? They're concerned about their sibling. They can't get sleep, but they're expected to go to school the next day and perform. And there's no 504 plan for them. 

And so, one of the siblings, she kind of detached herself away from Nia just because she thought this disease eventually was going to cause her to pass away. So she didn't want to have that attachment and, you know, go through grief. 

And so that's where psychology comes in and making sure that, you know, from the start you incorporate some sort of therapy, you know, for the siblings, for the parents and for the individuals diagnosed with sickle cell, because it goes a long way. And it's not a one-time thing. It's a consistent thing. 

And I always say that psychology or therapy kind of continues to reset the process. And there's going to be several resets. It's going to be at the beginning. It's going to be during. And in Nia's case, you know, when you get a cure, there's also another period where there's just a new revelation of life. 

So it's a big challenge for the family. And it's not a one-day thing. It's an everyday thing, sometimes every minute. So you just never know. And Audrey, you talked about it. You just, you know, one day everything is fine. You know, one hour, everything is fine. All of a sudden, the whole situation changes. 

Audrey (13:48) 
Absolutely. 

Jerlym (13:49) 
I appreciate, Quenton, you talking about grief because I think that is an emotion that occurs, but people don't want to talk about it. 

I think that initial diagnosis of a child with sickle cell disease may cause some grief for the parents because they recognize their child has this chronic illness. And historically, sickle cell … patients with sickle cell disease were not surviving into adulthood and that was scary to know that your child may not become an adult. 

And all the dreams and the expectations that a parent has about their child may not come to fruition because of this illness. And so I think grief is a big part of living with sickle cell disease and how to navigate that. 

And to your point about therapy, as a psychologist, of course, I appreciate any talk of therapy, but I agree that we all could benefit — parents, siblings, other family members of the patients could benefit from psychological services and support. 

Quenton (15:07) 
Absolutely. Me as a father, I just put on blinders. You know, I don't know if you've ever seen a dog that wears that cone so they can't, you know, bite their leg after they have surgery. So I put that around myself so I could only see what I wanted to see and block out the things I knew. 

Just because I'm a health care professional that can take place and only focused on all the flowers and all the sweet senses and things that are going to make me get through the day, you know, which could be a detriment on a whole other topic. 

But again, people unpack things differently and being able to have therapy helps you to really capture your feelings and then figure out how to really adjust and apply those things to life. 

Audrey (15:48) 
You were really smart to do that. We definitely didn't start therapy early enough and definitely did not get enough therapy. 

So hearing that, I think that's something every sickle cell family can learn from you and take advantage of getting therapy early and often. 

Quenton (16:07) 
Agree. 

Tekeima (16:08) 
So I'm hearing this holistic response to a patient's needs and not only the patient, but the entire family is beneficial for the support, the quality of life and well-being of the patient and family. 

So I'm wondering, beyond taking medicines for a pain crisis, can you talk a little bit about the emotional and spiritual responses to a pain crisis? 

Audrey (16:38) 
Of course. Prayer, prayer, prayer. We can never have enough prayer. More so than counseling, that's probably the first thing from the time we even thought she had sickle cell. We started praying and of course we haven't stopped. 

But that helped me get through dealing with her disease. That helped us as adults get through it. As a child, especially, she started having pain so early and dealt with so much. And it was really before she had that relationship, that spirituality, to help her get through that. So I had to cover her with that. 

I remember at a point in time when she was a little girl and she had been in the hospital and we went back to church and it was Maundy Thursday and they decided they would bring her up front to pray over her. And they're holding her head and they're praying over her. 

And she's looking out at me with daggers like, what are they doing to me? And how is this going to help what I have just lived through? 

And so it was easy, of course, for me to have that relationship with God. I think if anything, at that point, she didn't understand. And as she got older, I think she probably had more questions for God as to why she was experiencing that. 

So it was, you know, full circle with her learning her own relationship with God and her own prayer life to start with prayer whenever she was going through the pains and the other complications. 

Quenton (18:23) 
Yeah. I mean, I would say sickle cell disease is a strength-shifting disease. And when I say that, strength is shifting from one person in the family to another one. 

You heard me talking about having the dog halo on my head. And then my wife is a little bit more emotional, a little bit more in tune. And then you hear me talk about the siblings. 

And Nia told me that spiritually and emotionally, she was dead because the medications just pretty much numbed everything. So it was just like she was walking through life in silence. 

So, I mean, we always said we prayed for 16 years. We didn't know when it was going to happen. We knew it was going to happen. And it did on February 10, 2022. 

But it was a journey, you know, through those years. And again, therapy was definitely important because when we were doing our rotational shifts in the way that we were acting, therapy kind of grounded us in a way that we can refocus and we can kind of shift back to the equilibrium that we needed to be. 

And eventually you rock right out of it. And again, that's why that cadence of making sure that you do therapy is important. 

So for us, that's kind of how emotions and spirituality kind of affected our family. Again, it's a roller coaster and it's definitely something that you have to work at. You know, faith without works is dead. And so we definitely had to put in the work. 

Tekeima (19:51) 
I appreciate you both bringing up how you respond spiritually in these moments. Certainly spirituality is for some people about religion and for others it's non-religious coping. 

Either way and in both instances, we always want to remind our patients and families that we want you to cling to the anchor of what gives you hope. We want you to cling to the things that give you strength. We want you to cling to the things that are giving you peace. 

And I'm so grateful to hear that finding that has been both of your experiences. I'm wondering what is one way that you remind your child about their own identity and strength? 

Audrey (20:41) 
That was really, really important to me. You talk about different phases. I started out in life just wanting Courtney to live. I just wanted her to live. 

Then I started becoming concerned about her — versus just living — quality of life. I'm like, okay, she's lived longer than my nephew lived. Okay, we're going to make it. Let's talk about quality of life. Let's talk about normalcy. 

And I started pushing her to do any and everything she wanted to do. Instead of just worrying about her living and having her almost in a bubble, anything that they said could be a concern, being concerned. And she said, you know what? Preferably, we're just not going to live like that. 

And she was quite young when I decided just to let her be as normal as possible. I used to tell them when I would drop them off at school, both Courtney and Jen, I would say to them, Okay, you go in that school, don't just act like you belong there, act like you own it. 

And they would look at me like, what's that mean, mom? Don't act like I belong, but act like I own? And as they got older, they understood that. And you can compete at every level. You don't have to allow sickle cell to stop you. 

She was probably about five years old when her sister was doing swim team. And her sister was a good little athlete. And so she wanted to do things that her sister did. And swimming had always been a concern because of sickle cell. And when you have variations in temperature very quickly, you are thought to be much more likely to go into a crisis. 

And I said, you know what, this child wants to go swim. She wants to be part of the swim team. She's having to sit here with me anyway. We're going to let her try it. And off she went. 

She never became a great swimmer, but the fact she was participating in one of the happiest days for her. She's out there in swim meets or in the evening. And that's a whole other issue because temperatures drop and I'm letting this child swim in the evenings at swim meets. 

And she is swimming and she comes in and there's six lanes in the pool and she comes in. And she is in last place. And as she's getting out of the pool, one of her health care providers was there. 

And she grabs her up out of the pool. And Courtney jumped. They hand her a pink ribbon. If you know anything about swim meets or track meets and things, blue is first place. Pink happens to be last place. And for a five-year-old little girl, pink is first place no matter what place it is because it's pink. 

And she looks at her health care worker, and she gives her a hug, and she holds up her ribbon, and she looks at her sister, and she says, I got the pink ribbon. You have all those blue ribbons. 

And we're all laughing, but at that moment, all she cared about was she was out there participating and being like every other kid, and she had the best color ribbon. 

Tekeima (23:50) 
Talk about trusting the process. As I listened to you share that story, I'm hearing you move from this space of fear to a space of trusting that things will be okay. 

And if not, we will change course. It feels like that's not the easiest thing to do. How were you able to make that transition? 

Audrey (24:17) 
I'll tell you, that takes me back to your prior question of faith. Because I started out the exact opposite. My journey was a little different. 

As I mentioned to you, I found out in utero that she was going to have SS sickle cell disease. And I had started searching for help before she was ever born. I showed up here before she was ever born. 

And you can appreciate this choice of words. I think they were trying to get the men in the little white coats to come get me and take me away because I think they were trying to figure out, why is she here? She doesn't have a baby yet. 

She wants to talk about a care plan. And she's got her own ideas. Because all I wanted to focus on was what are we going to do to keep my child alive? And I want to talk about it right now. And I was obsessed. 

I was definitely not your norm. I was on the far extreme. So for me, five years later, to have come so far in my life acceptance of her having the disease and my goals for her life and plans to live a normal life was a long journey for me in five years. 

It really was. And it was definitely faith that got me there. Yes, a lot of crying days. She seemed to spend a lot of time in the hospital. With every hospital visit, I was re-questioning God. 

Okay, okay, okay, You're supposed to have me. Why are we back here? 

So it was definitely, definitely a journey. But I knew I had to come to grips with some things to help her be successful in her journey and not have her give up and say, woe is me. 

I couldn't always be crying about the situation, which was where I was. So I had to fix myself to help her. 

Quenton (26:19) 
You said some things that really hit me and you talked about how you were comparing your daughter against other people. 

And so social media is a blessing. It's a curse at the same time. And I say it's a blessing because, you know, my wife met you a long time ago and she followed your daughter and what she was doing, what she was saying. And that gave her strength and encouragement that yes, Nia would be able to do these things and see these things. 

But at the same time, when you see those stories that don't go that way, like you mentioned, it takes you down a notch. 

And I believe, you know, when little people in white coats are supposed to come get you, that you were fertilizing the ground. 

And I always say, get a binder. We have a binder. We started that binder from the very beginning because we wanted to make sure everything was documented in there like how she felt, when she ate this, or when she had this medication, what was going on. 

We had all the health care providers in there. So if we had to go somewhere, something happened, we could just drop it on a family member's desk. Or if one of us was wearing a halo and wasn’t paying attention, they could go to that binder and figure out exactly what they needed to do. 

And that served us well over the years. Even to the point at a certain health care facility, they would track the enzymes in the body and how they responded to certain drugs. 

So I went to another hospital and they wanted to give me a Tylenol. I'm like, no, that’s cytochrome P450. She doesn't metabolize that right, so you can't give that. You know? 

And they're looking at me like, what are you saying and who are you? But that's how you have to be involved to make sure that you're caring for your kids. 

Audrey (28:07) 
You're a poster child for being the advocate that every sickle cell child needs. Oh my goodness. 

Listening to you, I think yeah that's what we all need to be is an advocate. Not only as a child, but even sickle cell adults need an advocate. 

And having that knowledge that you had made you the perfect advocate for your child. 

Quenton (28:32) 
And it's a community, right? And I told you how you helped even though you didn't know you were helping. 

Audrey (28:36) 
I didn't. I did not. 

Quenton (28:38) 
And how you, again, have to be able to be in a space, therapy, to collect that information and move forward with it. 

Audrey (28:46) 
Because your wife remembers me doing those crying spells. Your wife and I were in a playgroup together when Courtney — it was before Nia was born and when Courtney was very little, and she remembers my tears. 

She remembers my tears not only over her physical complications, but, oh my goodness, when the child couldn't read for years. She remembered, I was one of those, I thought, I didn't know who could help. So I always was asking for knowledge and sharing my concerns to see who might be able to help me. 

I wasn't very secretive about our struggles and especially about that one. I have friends who laugh to this day about how much energy and time and tears I put into her struggles and her inability to read and things. 

So yeah, she saw me at some of those really tough years. Yeah. 

Jerlym (29:37) 
And community is just so important. Both of you have really demonstrated the importance of advocacy. 

And I think when you have a community surrounding you whether it's your family, the medical team, the community-based organizations that we have, it really helps with supporting parents and patients in living and managing this really tough disease. 

And so my hats off to both of you for being advocates and helping your children to thrive with sickle cell disease. 

Audrey (30:22) 
Yeah. I know one thing I read and Nia will be your test case that if your children see you advocating for them when they transition into adult care, they're going to be much more likely to advocate for themselves. So she'll be prepared to advocate for herself, having seen that from you all. 

Quenton (30:47) 
And with that being said, I think she gave the doctors a run for their money. To the point the doctor was just like, You know what, Nia, I just need you to listen. Right. But, you know, that's true. 

Audrey (31:04) 
You know, it's funny when you talk about that. I know I mentioned earlier that unfortunately sometimes you encounter health care workers that don't know much about sickle cell. And I'll never forget, Courtney was in the hospital when she was in college, and she went to school where there weren't many patients with sickle cell. 

And there was not a hematologist on call, and so the hospitalist calls me. And he says it in the most complimentary tone possible. He said Oh my goodness, your daughter has taught everybody more about sickle cell than we ever possibly could know. 

And I thought, how many miles am I away from you? Because I don't know if you think that's making me feel good right now, but it's not. So, you know, it's good that, you know, Nia has learned and hopefully Courtney's learning to be able to speak up about their disease and know enough to advocate for themselves. 

Quenton (32:07) 
Well, we saw Courtney jump out of an airplane. 

Audrey (32:09) 
Oh, let's not talk about that situation. Let's not talk about that situation. Yeah, and what's interesting about that, she was in another country studying abroad for a semester, and she ended up in the hospital. 

We won't say that was why, because it was a few weeks later in a foreign country. Where all the wonderful Spanish she thought she knew in Barcelona, when she was lying there, she forgot how to speak English. 

And that's a whole other story of dealing with sickle cell and the struggles as they transition to adult care. It was one of those that we had to reach out to her pediatric health care institution. And they had to find somebody in Barcelona to come in and help her because she, yeah, all that knowledge she has about sickle cell and having to translate it into Spanish didn't work really well shortly thereafter that. 

But that's another story for another day. I didn't know you saw that. 

Tekeima (33:24) 
Sounds like there's quite a bit of living and learning. Yes. And the beauty of it all is that your children have you, you have your resources, and even in the ongoing learning about sickle cell disease, you all are trusting that things will work out in your favor as you listen to the doctors, as you follow the plans of care, and do the things that you have learned even intuitively how to do. 

I'm wondering, Quenton, if you haven't had a chance to think about this, what is it that you wish your child would always remember about themselves, even beyond their diagnosis? 

Quenton (34:11) 
That their diagnosis is not their identity. That's not them. It doesn't make up who they are. And continue to ground them in who they really are. And we can go through several different adjectives around that piece. 

But again, I go back to therapy because that helps to certify that over and over again. But that's the main thing that I find myself saying. So that's the mantra of the family. 

Tekeima (34:44) 
You're not your diagnosis. I think there may be many people who need to hear that. 

Audrey (34:49) 
Absolutely. 

Tekeima (34:50) 
Especially young people who are discovering themselves and finding their way. That's, I think, something we mentioned that could go on a T-shirt or something. 

Several mantras, several nuggets, several ideas about ways that you can best live as you manage your illness. How can medical care teams, family, friends, and community members help you all as caregivers? 

I've listened to the stories. We have heard some beautiful things about the ways you've overcome, but what are things that we all can do to be supportive and helpful for you on the journey? 

Audrey (35:36) 
One thing is to understand that sickle cell is a very individualized disease and every patient is different and every phase is different. And I know health care is a science, but there is a lot of gray that goes along with sickle cell and treating each and every patient in each and every situation as the individual that it is. 

And helping us educate others about sickle cell is so key because sickle cell is not something that makes you weak. Sickle cell makes you strong and we need others out there in the world to understand that so that our children and young adults can grow and be successful. 

One struggle Courtney has had as she has transitioned is not wanting people to know that she even has sickle cell. She wants… she doesn't want anyone to think she can't do her fair share of work as hard as everyone else is working because she has sickle cell. 

And so it's almost, I won't say a fear, but it's a coping mechanism as she enters a career as a very young adult and wanting to do all that she can do without ever being stigmatized because she has sickle cell. 

So if health care workers in the community can help us educate others about sickle cell disease, I don't think she would feel so timid when it comes to sharing herself about sickle cell in the work environment. 

Tekeima (37:30) 
Okay. 

Quenton (37:31) 
And I would say it's like a puzzle. You know, if you put a puzzle on a piece of paper, on a table and you try to solve it. If there's a piece missing, you'll never get the full picture. 

And so in the United States, one out of every 365 African-American kids will be diagnosed with sickle cell in one out of about 16,000 Hispanics. So even if you're a health care provider, you're in the community or you're a family member, the way that you respond, the way that you show up helps either complete that puzzle or make the gap in that puzzle bigger because it's going to affect you. 

You know, if the patient doesn't get the care they need. You know, they get older, they wind up going to the emergency room. Some of them suffer because, you know, they can't stay at a job because, again, it's silent and people don't understand. They lose their job. And then now, you know, they're in an ER without insurance and that makes everybody’s prices go up. 

They're in a school. They're in pain and they don't have the right 504 plan and nobody's paying attention to them and they don't do well. And it's not because they don't want to do well. And again, there's a gap there. 

If they're in a medical facility and they don't understand, like you mentioned, about sickle cell disease, the care is not there. So they go home without what they need and they wind up showing up again. So it's a loop. 

And if we don't fill those gaps and we're talking about sickle cell, but this can be applied to any disease state, then you're going to have those gaps in that puzzle and it'll never be a complete picture. And then you have that repetitive loop of things that we just really don't want to see. 

Audrey (39:01) 
Absolutely. 

Jerlym (39:02) 
I think it's important to highlight both of your points about sickle cell being an individualized illness and how we need to treat the individual, treat the whole person. 

When we think about pain, we think about just the physical aspects of the sickled cells causing pain episodes. But really it's like a three-headed monster. So there's the physical, there's the psychological, and then there's the social. 

So we have the physical, what's going on in the body. We have the psychological, how we think about the pain, the emotions surrounding having pain. And then we have the social, so the stress of life or school or family, what's going on around them socially. 

That also impacts their pain. So we really need to treat each patient as a whole person and focus on all aspects of their life in terms of how to manage this disease. 

Audrey (40:08) 
That's a great point. 

Quenton (40:10) 
Yes, absolutely. 

Tekeima (40:13) 
I tell you, this is certainly a conversation that could go on and on for me because I've learned things even throughout this dialogue that I didn't know as well before. So. 

We certainly appreciate you two sharing. And I'm wondering if there are any final points that you would like to share that didn't come up in my questions or in our dialogue. I invite you to share those things now. 

Audrey (40:45) 
I just want to say we appreciate this avenue to share about sickle cell because you would think this disease would have more visibility. And more understanding. 

There are so many children, so many adults still suffering greatly because of lack of knowledge. So this has been an opportunity to bring light to that. And any chance we get to educate more about sickle cell disease, we're so thankful for. 

Quenton (41:21) 
And I would just like to say to the parents or health care professionals, anybody out there who is listening to this conversation, number one, share it because you just don't know how this would touch those individuals who are going through it. 

Number two, you know, learn something from it. You know, don't just listen. Apply what you've heard. You know, just listen to us. We're regular parents and we're trying to take it day by day. 

And you've heard the things that... That we're going through and how we're trying to make things happen. But you also heard some of our mistakes. And so take this conversation and don't make some of those mistakes. 

And the things that we felt like we are doing well, please take those and capitalize on those. And don't be afraid to reach out and don't be afraid to challenge because it is for your family and it is for your child. 

And then just remember that there's always someone out there willing to help you. I know we all are right here at this table. That's why we're doing this. And so we really appreciate your attention. And I definitely appreciate everybody at this table and the conversation we had today. 

Audrey (42:29) 
And in closing, one thing I want to remind every parent of is do not allow statistics and expectations to limit your child. 

Sickle cell does not have to limit your child from trying and doing and succeeding, especially academically. Sickle cell is not a learning disability. It does not have to determine your child's outcome academically. 

So please, please do not lower the expectations for your child living with sickle cell. 

Quenton (43:09) 
And Courtney is a great example of that. 

Audrey (43:11) 
I don't know about all that. You just mentioned she jumped out of an airplane. There are some expectations of problems with sickle cell you should live by. 

Tekeima (43:23) 
Well, thank you, Audrey, Quenton, and Jerlym for your time, your intention, and your vulnerability today. 

It's important to remember that people with sickle cell disease have great strength, but they do need support. They do need understanding, and they definitely need good care. 

The more we learn and talk about this illness, the more we can make a difference. Thanks to each of you. 

Narrator (43:53) 
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient Family-Centered Care and Psychosocial Services at St. Jude Children’s Research Hospital. 

Please subscribe, leave a comment, and share this podcast with others who may benefit from this support. Visit stjude.org/caregivers-share for show notes and educational links related to each episode. 

This podcast is for informational purposes only and does not render medical advice or professional services. This podcast does not establish a patient relationship between the listener and St. Jude Children’s Research Hospital. 

The opinions expressed belong to the caregivers. Your personal experience may differ. If you have questions about individual health concerns, psychosocial needs, or specific treatment options, please discuss them with your child's medical team. St. Jude does not endorse any branded product or organization mentioned in this podcast. 

Accuracy and availability of Caregivers SHARE: A St. Jude Podcast transcripts may vary. Transcript text may be revised to correct errors or match updates to audio. Audio on stjude.org may be edited after its original publication. The authoritative record of Caregivers SHARE: A St. Jude Podcast episode content is the audio record. 

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Season 3 Episodes