A native of Nigeria, Ade Adeyokunnu emigrated with his family as a child and grew up in Maryland. Currently living in the Philadelphia area (and a newlywed!), he’s been passionate about sickle cell disease advocacy for as long as he can remember — perhaps because both he and his younger sister, Bukky, both live with the diagnosis. It’s what drove him to create SikCell, the first online community for people living with sickle cell disease, in 2009. When living with what can feel like an isolating and often-misunderstood chronic condition, Ade firmly believes that building a support network of people who understand what you’re going through is crucial to long-term quality of life.
Tune in as Ade shares:
- that testing for sickle cell among infants was limited in Nigeria when he was growing up there
- how being the child of immigrants has influenced his healthcare experience
- the impact of religion on his upbringing — and how it intersected with perceptions of his diagnosis
- that sickle cell is often stigmatized in African cultures
- that he didn’t start advocating for himself until he was in grad school
- that on average, he is hospitalized in crisis 2-3 times per year
- that he has often faced racism in the ER — which, of course, has only exacerbated stress and pain
- that it was a blessing in disguise to grow up with a sister who understood his disease experience
- that bone marrow transplant is currently the only viable cure for sickle cell
Lauren: Okay guys, thank you so much for joining us today. I am here with Ade Adeyokunnu. Ade is actually one of our other guest, Bukky’s, brother. And he is the founder of an organization called SikCell, which is raising awareness about the condition. He lives with sickle cell himself. So this is brother and sister who live with sickle cell. And Ade’s gonna tell us about his experience. Thank you so much for being on the show today, Ade.
Ade: Thanks for having me, Lauren. A pleasure to be here.
Lauren: Absolutely. What a joy for us to connect. So let's start at the very top of the story. When and how were you first diagnosed? Was it when you were born? And what steps have you taken to control your health since then?
Ade: Yeah, so I don't remember the exact age that I was diagnosed, but I want to say it was around 2 or 3 because it was relatively earlier on. I just remember being sick a lot as a kid growing up in Nigeria, initially, before I moved to the States and frequently being in the hospital. And then growing up learning what sickle cell was and how it affected my body.
At that young age, I didn't really quite understand what was happening, but I definitely knew that I wasn’t “normal”.
But I didn't start to take steps to take control of my health till maybe way later on, later teenage years probably.
Lauren: And if I remember correctly, also Bukky mentioned that it seems like your parents didn't know that they were both carriers of sickle cell trait. So they didn't know to even look for that when you guys were first born. So that's got to be a huge realization, not only for them, but also for you guys.
Ade: Yeah, absolutely. I think back then, a lot of people, especially back in Nigeria, even now there isn’t a lot of testing for people that have the trait. And even in the States, it wasn't till recently, I think, maybe late ‘90s, that most states require testing for sickle cell for newborns.
Lauren: So what have you done to be able to take control of your health since you got the diagnosis? Obviously, when you were really little, that was probably something that was managed by your parents. But how has that evolved for you, and are you able to keep crises at bay?
Ade: It’s been quite the journey for me. Growing up, from middle school, high school up until college, I actually didn't even have a hematologist. I was just mostly seeing a primary care physician, my GP. He was okay, but it didn't feel what I needed as someone living with sickle cell. So after graduating from college was when I really started to take control of my health and be active about it. I found the hematologist that was helping me out with my health, and then just educated myself and learned things every day … like, hey, what is this? What is causing this? What is the mechanism behind this drug, and how does it work?
I always make the joke that folks living with chronic illnesses should get an honorary MD degree because they know so much!
Going into that rabbit hole and educating myself has been one of the key aspects of taking control of my health.
Lauren: So what about this transition from pediatric care to adult care? Did your parents have to step up and become advocates for you when you were little? And when were you able to step up and start becoming your own advocate? What does that journey look like, and how has it impacted your relationship?
Ade: Yeah, you mentioned my sister earlier. I think she had more of the traditional transition from pediatrics to adult, more than I did. Just because, as I mentioned earlier, I didn't really have that hospital system of Children's National or something, where I had all of my doctors in one place. I just had my main primary care doctor.
Lauren: She’s only just gotten that herself at Johns Hopkins.
Lauren: And this is in adulthood, yeah.
Ade: Exactly. And I think, to some degree, having immigrant parents also played a big part in that, because they aren't as active with your health care, per se, and being super advocates for you. And I think another layer to that for my parents, specifically, is because they're quite religious. And having religious parents, they mean the best for you, but they don't always go about it the best way. Because a lot of things fall back to, oh, yeah, God would do this or God would do that. So some things might fall by the wayside, instead of being quite active about taking care of it. So it wasn't until I was able to do so myself and kind of put things in my own hands, that I was able to take better control of my health pretty much, and to reduce a lot of the crises that I had.
Lauren: That's that eternal push-pull between faith and science, which we're here to say … they can coexist peacefully!
Ade: Yes, absolutely!
Lauren: You mentioned also before we started the interview, and this might be a good time to talk about it … culturally speaking, as well, there's a lot of stigma attached to sickle cell in your home country of Nigeria. And that probably had an influence on your parents’ perception of what was going on too, right?
Ade: Yeah, absolutely. So sickle cell and most illnesses — but I want to say specifically sickle cell — is one of those that's very misunderstood and often stigmatized. Misunderstood, in the sense that back then in Nigeria, they didn't really know exactly what was happening.
So there was a lot of superstition and mythology around what was happening. Some people back then were, like, this is based on witchcraft.
And even to this day, some African nations … I know in Cameroon … it was just a few years ago, maybe two or three years ago, I was reading an article that this is still happening. So there's still a lot of unfortunate ignorance still happening that's perpetuating a lot of stigma. And it's become like a taboo thing that people don't speak about. But in the last couple of years, at least in Nigeria, with some of the organizations I've been involved with, there's been a big push for awareness and education. And people are speaking up more about this to teach other people what's going on in ways to actually prevent this and take care of their health.
Lauren: That’s very exciting. That's great news. And I know that SikCell is among those organizations that are partnering with international organizations, which we will get to. But I would love you to also talk to us about what a typical day is like for you. I know I ask this question and there's no such thing as a typical day for most of us. But how are you finding a balance between this very American ‘work, work work’, and your life, and being able to manage potential crises and being able to be mindful enough to prevent them from happening? How does that work out for you?
Ade: Yeah, it's definitely a challenge at times. I think it's been an adjustment period for me most recently, because I went back to school two years ago for my MBA full-time. So I actually just finished that last year.
Ade: Thank you! I just started working again last year. So it was kind of an adjustment making the shift from being a full-time student again to now working again. I feel like I had a lot more leeway definitely when I was a student. I've been a student three times now, and I feel like each time it's gotten maybe a little bit easier. It kind of goes back to your question from earlier; when I actually started to advocate for myself personally was when I was in grad school admission in 2009, which is when I created that community, SikCell, for people living with sickle cell. But day-to-day right now, it depends. I work in marketing, which is a desk job — which is good and bad, because you're sitting down all day.
So I try to be active with getting up every hour, making sure I hydrate.
Some days are longer than others. We kind of touched on this earlier, too, when we were having a conversation about trying to get enough sleep. Because I’m always tired and groggy in the morning. Sometimes we have those 8 o'clock meetings!
Lauren: Ade is not a morning person. He's just like me!
Ade: Not at all. So it really just depends.
Lauren: It’s interesting because it's this 9-to 5 expectation, even though that's when the American workday functions. A lot of us don't function at nine.
Ade: Yeah, I definitely don't function well at nine. It takes me a while. My peak hours are probably after noon.
Lauren: So I've got you in sort of peak hours right now; this is good! So, what is it like in terms of actually preventing crises from happening? What does that look like for you? It looks like sleep. But is it also exercise, diet, socializing? How are you making that all work?
Ade: Yeah, all of those things are very crucial aspects of it. Sleep definitely. For me, making sure I'm hydrated, so I always have water or something with me. I think that's probably one of the big triggers for me. On average, I still have two to three episodes a year where I do have to be hospitalized.
Lauren: That’s a lot.
Ade: So I'm hoping I'm done for the year. But it definitely can be a lot. And keeping your stress levels down, which always can be hard to do, too. Because life in general can be stressful with the different push-and-pull and the environment of what's been happening in the last few months of this pandemic, and just everything else.
So making sure that you try to stay level-headed through it all can be challenging.
Lauren: Absolutely. And I'm wondering if you've been in situations … because this is a very invisible illness, right … have you been in situations, be they medical or social or otherwise, where you've been forced to validate the existence of your diagnosis to people who just didn't understand it because they couldn't see it? Because there was no visual signifier?
Ade: Yeah, absolutely. I think a lot of times, in the workplace especially, it can be a little bit hard to get the point across to people, because they don't see it. Until one day at my previous job, I actually ended up having a crisis at work and had to go into the hospital. Sometimes when they see that happening, it helps to ground them a little a bit more.
Lauren: But it sucks because you have to go through the crisis.
Ade: Exactly! But yeah, I've definitely been in those situations a few times where you have to kind of vouch for yourself and justify that you’re in pain.
Lauren: We've been talking a lot on the show … the timeliness of these episodes is kind of interesting … because we're in the midst of another upheaval regarding race relations in the US, very much needed. And being a Black man in the middle of all of this, being someone who has a compromised immune system, and needing people to believe you — which is exactly what so much of the discussions we're having about race are about, let alone about medicine. What have your experiences been like in the health care system because of the way you present — because you're a Black man going into the doctor's office. Have you experienced prejudice, and/or privilege in the system because of that, and can you see your circumstances maybe being different if you were a white guy walking into the office?
Ade: Yeah, that's like a loaded question.
It's tough to say … this would be the way it is, if this wasn't my skin color.
But I can speak to my personal experiences that I have had. At most doctors’ offices, at least for my hematologist and my other personal care team that I have, they’ve been pretty good with treating me as just who I am.
Lauren: Because they’re familiar with sickle cell; they know what they're dealing with.
Ade: Exactly, exactly. But I think the worst part of it is when I do have a crisis or I have an episode and I have to go into the hospital or go into an ER that I've never been to before. There's no track record or anything like that. I think those are the times where I often face those prejudices. You can be in the ER waiting room for hours on end in pain. You’re already in excruciating pain, and when you do get triaged, you're still waiting to see someone. And when someone does see you, they don't give you the right dose of medicine that you need, or they give you something else instead of what you actually need, that you know actually relieves your pain. All of this just exacerbates the pain, and causes further complications, which is really unfortunate.
Lauren: Well, and the more pain you're in, the more stress you're experiencing, which is then causing more pain. So it's like a vicious continuing cycle.
Ade: Yeah, exactly. So I think in general, Black people have been known … I think, I can't remember the stats, but like 22% or so …there was a study even at the infant level, which kind of blew my mind … are less likely to receive the necessary pain meds that they need. As you mentioned, what's happening right now with the Black Lives movement, I think goes way further than just what we see. And it touches on these invisible conditions within the healthcare system as well.
Lauren: Absolutely. Well, and it's interesting because your experience of prejudice in the system is the same as your sister’s. You guys are both talking about emergency situations … I know Bukky mentioned, knowing which hospitals you can go to and which you can’t, because the doctors or nurses might not know about sickle cell when you come in with a crisis in emergency. Some aren't educated.
Ade: Yeah, absolutely.
Because most of these doctors, they probably spent half-a-day learning about this in med school, right?
So they're not very familiar with it to the extent of the pain that it causes and other complications that come with it. So a lot of times you're educating these doctors. I’ve been in the ER before where a doctor or nurse would ask, “Oh, so for how long have you had sickle cell?” “Oh, I was born with it?!”
Lauren: Since I was born, thank you!
Ade: It’s a really terrible way to start things off when you're in the ER. It’s, like, oh, wow, this is not good.
Lauren: Yeah, there's an ignorance there for sure. Is sickle cell still considered a rare disease? Because I wonder about how much time is spent in medical school with people learning about different diagnoses? Is there less time spent on sickle cell because it's considered rare?
Ade: That could potentially be one of the reasons. Who knows.
Lauren: People are also prejudiced. This is not to undercut the fact that people are, literally, racist.
Ade: But it is considered a rare disease in the United States, because it's said to affect less than 200,000 people. I do work with some of the rare disease advocacy groups as well.
Lauren: It's considered rare, but you're talking about how you didn't find out until you were a couple of years old. There could be people who have it, who don't know and are experiencing chronic pain and don't necessarily understand why. They could be undiagnosed. So there could be more people than we think.
Ade: Exactly, especially given the fact that there are so many different types of sickle cell disease. There are less severe versions, with people who don't often have a crisis. I know people with sickle cell SC, for example; they didn't have their first crisis until they were in their mid-20s, and 30s.
So there could be a big population of people who just don't know.
Lauren: And there's all that stigma attached to it, too. So who knows who's reporting what, and not? What kind of sickle cell do you have specifically?
Ade: I have sickle cell SS. It's usually based on your hemoglobin. The genetic mutation, the common popular ones are SS, SC, and thalassemia. And there are various types of thalassemia as well.
Lauren: Just swinging back to what we were talking about a minute ago, would you say that these inequities in the healthcare system — racial, gender even — would you say that they are a public health crisis?
Ade: Oh, yeah, absolutely. I think that there's a lot more attention being paid to that aspect of it now. And a couple of different groups … that Minority Health Group is currently working on some initiatives to actually look at data within the sickle cell space, and how socio-economic status affects health. I think looking at social determinants of health right now is a big push in that space.
Lauren: Oh, that's good to hear. So talk to us about your advocacy work. Can you tell us about why you started SikCell? How it functions as a support for you, and what work you guys have been doing as you've been growing?
Ade: Yeah, absolutely. I touched on it a bit earlier. I started it back in 2009. It’s SikCell; there’s another Sick Cell and we often get confused. Hers has a C in it and they're doing amazing work over there as well. So I started it back in 2009, when I was looking for other people to connect with, going through what I was going through. I guess I was a little bit blessed in a way in the fact that my sister had it. So, growing up and being at home, we were always close in that regard.
So I knew someone else going through what I was going through. We kind of bonded on that.
Lauren: It’s kind of amazing. It sucks, but it's also kind of amazing.
Ade: Yeah, it was kind of a blessing in disguise. So I didn't feel as lonely. But I felt it when I left and went to school, because I was, like, I'm on my own here, no one really understands what's happening. So I started searching online just for communities. This was before the advent of the Facebook groups, and all of that was popular. There was kind of nothing out there. So I decided to just create this. And then through that, it took on a life of its own. I got to meet people all across the globe living with sickle cell, and a lot of people saying that they’d never met anyone else with sickle cell. And that this was their first time meeting people. And then through that, being able to work with different organizations like the Sickle Cell Consortium, the Sickle Cell Disease Association of America, WEGO Health, like we talked about earlier. So it kind of just took on a life of its own. It's been way more impactful than I ever anticipated it to be. And I'm just very grateful for being able to do that.
Lauren: It seems like it was a very natural transition for you to start advocating for yourself, and then start being an advocate for others and being able to create this safe space.
Ade: Yes, absolutely.
Lauren: And I think it's important for us to note here, and we’ve talked about this and we've had other sickle cell advocates on the show before … sickle cell, while it largely affects people from an Afro-Caribbean background, it's not just Black people who have sickle cell.
Correct, there are a lot of people on my site that I've met that aren't Black, that have sickle cell.
I've met people in France and people in a bunch of different other countries. And when I go to some of the conventions in person, as well, I get to meet a lot of diverse people that aren't just Black people.
Lauren: So let's talk about our healthcare system again. I know that we've touched on ways in which it's not serving patients. Are there ways in which it is working that you think helped you through your own health experiences?
Ade: Yeah, absolutely. I think it's one of those things … what’s the saying, one man's trash is another man’s …
Lauren: One man's trash is another man's treasure.
Ade: Exactly. So for me personally, I've been fortunate enough to always have some form of insurance, whether it was through my parents when I was younger, or through my employer. So I think I've been blessed in that regard of always being covered when it comes to my health care expenses — because I couldn't imagine otherwise. Because what I pay out-of-pocket now is still very, very high on a yearly basis. But what I would be paying out-of-pocket without that insurance coverage would be five times as much. I had surgery this year, actually in February, for AVN of the hip. I had a cord compression done. I'm still recovering from that. That's a really high expense. But fortunately, having the insurance through my employer, I was able to cover most of it. There's some aspects of the health care system that I think are doing well. And it also depends on where you are. Being in Pennsylvania now with the Penn Health Care system — which I think is one of the best ones on the East Coast at least — I’ve had really, really good experiences with them. My hematologist that I have, I can call them ahead of time if I'm in a crisis before I go into the hospital, so I don't have to wait as long, so they can prep them. A lot of those little things, I think it really depends on who your provider is and where you're based. Like what we touched on earlier about you being in LA, and having access to more of the holistic system, too.
Lauren: Well, and I suppose it also depends internationally as well, that things will change. Because you're talking to people all over the world, so I'm sure you're getting a sense of what they're going through in their various systems as well.
Ade: Yeah, absolutely. I recently had a WhatsApp chat session with an organization in Nigeria, talking to them about how expensive the health care system is there. And when I shared some of the out-of-pocket prices of some of what I had to pay here, they were mindblown, like, oh, wow, that's really, really expensive … way more than they’re used to seeing. So, it's all relative.
Lauren: Absolutely. So I would love for you to be able to give some tips. You're an expert in living successfully with sickle cell. Can you give your Top Three Tips for someone who, maybe they suspect they've got something a little off with their health? Maybe they're living with sickle cell. What would you recommend to someone who's living with an invisible chronic illness like this … your top three best pieces of advice? Or something you would have told yourself when you were younger, maybe?
Ade: I would say the first one is, don't doubt yourself as far as if you think something is off. You’re your own best advocate, and you know your body the most. So, be proactive in seeking that care.
If you have to get a second or third opinion, go ahead and do that. Don't always just rely on whatever the first person says.
Secondly, I would say, find a community of like-minded people, because that goes a really long way. Feeling like you're on an island can be very isolating. But when you have people that can relate to what you're going through, and they get it, that helps and they can actually point you to other resources that you might not be aware of that can be helpful to you as well. And then lastly, I would say, just continue to educate yourself. Like I said earlier, I'm always learning something new. In the 13 years that I've been actively advocating for sickle cell, there's still always something new to learn, every day. So never stop educating yourself on the topic.
Lauren: I think that's really well said. What about one more Top Three list — and this one's my favorite: Top Three Things that you turn to for joy. So things that give you unbridled joy. We know you've had to be mindful of a lot of your lifestyle choices in order to avoid crises. So this can be something that you're going to do it anyway, like a guilty pleasure or a secret indulgence or even a comfort activity. If you're in the ER and you need to be comforted, what are three things you turn to for joy and grounding?
Ade: I’m definitely one of those people that’s, like, I'm gonna do it anyway. Like YOLO … live your life. Which could be good or bad! The one thing I do love doing is traveling; I absolutely love traveling. I fortunately got a chance to study abroad for my semester when doing my MBA last year. I studied abroad in Hong Kong. And while I was there, I got a chance to travel to nine Asian countries, which was just amazing. So getting a chance to experience different cultures, different foods, something out of your normal purview, is something that I love to do. I said for better or worse earlier, because a lot of times people are actually afraid to travel because of sickle cell, because of the long flight time and the oxygenation. Low oxygenation could be a problem and trigger a crisis. But for me, I just always take all the necessary precautions needed. I always feel like you should not live in fear of a crisis, and let it hold you back from living your best life.
Lauren: What if you’re going to a country where sickle cell isn't really the sort of disease that’s discussed? That's got to be a concern, too, if you've got to go to the hospital?
Ade: Yeah, absolutely it was a concern for me. I think taking precautions … I was going with a good friend of mine who knew about my sickle cell. And I did end up getting sick twice, and being in the hospital in the span of a few months that I was there. But to me that was just a blimp in the whole experience that I got to have. And if I got a chance to do it all over again, I would.
I've traveled a couple of times before, internationally, where I ended up being sick in that country. And it definitely can be scary, for sure.
But I always tell people, if this is something that you really want to do, don't let your illness prevent you from doing it. And that goes to everything — not just traveling — but achieving your dreams and goals in general.
Lauren: Yeah, and maybe buy the trip health insurance!
Ade: Oh, yes, absolutely! Trip health insurance.
Lauren: Which is cheap. You can get it super cheap.
Ade: Yes, it literally saved my life. It was amazing. The one I had was even better because I could just text them through the app and get someone on the phone to translate for me when it came to language barriers and everything like that.
Lauren: If only we had that in our healthcare system here to begin with!
Ade: Right? That would be amazing.
Lauren: Okay, so travel is your first one. What about two more?
Ade: Travel is one. The second one is something I do love — every once in a while — a nice cocktail.
Lauren: It’s Friday! I’m havin’ one soon!
Ade: Yes! I'm a sucker for some good bourbon. I lived in Kentucky for three months, so I really got into bourbon while I was out there. So that is always a joyful moment, to have a good Old Fashioned once in a while. And then lastly, I would just say media is the umbrella I'll put it under … music and shows and movies in general. I like watching a really good movie or a really good show, or hearing a really good song that just makes you want to dance.
Lauren: Absolutely, I love that. So what would you ask listeners who are tuning in today? What can they do to support you and the sickle cell community and SikCell in the continuing work that you're doing?
Ade: The first thing is, you can follow us on Twitter. We're on Twitter @SikCell. And you can check out the community online at SikCell.com and register to be a member, and be active on there.
And then for the sickle cell community at large, the one thing I always tell everyone: please give blood if you can.
That's so crucial for people living with sickle cell because a lot of times we need blood transfusions. Especially with African-American listeners … we are the group that gives blood the least, and oftentimes we need it the most. So if you also can … this goes a step further than giving blood … to register on BeTheMatch.com to give bone marrow. It's a big ask, but that’s the only viable cure right now for sickle cell — if you have a bone marrow transplant match.
Lauren: So what is next in your advocacy journey, and in your wellness journey?
Ade: I feel like there's so many exciting things on the horizon for me right now. I am currently on the Community Input Panel for the Cure Sickle Cell Initiative, which is being spearheaded by the National Heart, Lung, and Blood Institute/NIH. So that's really awesome. I'm looking forward to seeing what comes of that. It's pretty much a research effort that was designated to help celebrate promising generic therapies to cure sickle cell. So it's really cool cutting-edge stuff. And I'm also currently working with a couple of other warriors that do advocacy work. One of them is a photographer; she has a project called Unbreakable Warrior Project and she plans to do a black-and-white showing our invisible scars. A lot of us have had multiple surgeries. I mentioned I had one earlier; I've also had gall bladder surgery. So, making the invisible more visible.
Lauren: That’s what we're all about!
Ade: Yes. And then lastly, I've been saying this for the last couple of years … I think I'm finally going to get to it now … is to revamp the SikCell site, to make it more interactive.
Lauren: I love that. Ade, it’s been such a pleasure to have you on the show.
Ade: Thanks again for having me. I really love and appreciate what you’re doing with your podcast, giving people a voice and raising awareness. I just think it’s awesome.
Lauren: You’re so kind. I’m so glad you were able to share your story with us today, and thank you for being so open. I know especially the Black community is doing a lot of extra heavy lifting right now. So thank you especially for taking the time at this moment in time to share everything with us. I'm so appreciative and so honored to have shared this time with you.
Ade: Oh, thank you. It's my pleasure.