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0:00:00 - Albertine Badio Hey y'all, welcome and welcome back to the podcast, where we are who we say we are, and that is Real Dope and Redeemed. I am your host, albertine. Today I have a special guest with me. This is Pearl, as you can tell by the title, we'll be talking about sickle cell, sickle cell awareness and, most importantly, how faith ties into it. So, pearl, thank you so much for joining me, thank you for having me. You're very welcome. So tell us a little bit about yourself, your platform and why we're here today. Okay, well, thanks again for having me.

I am Pearl. I am Brown Pearls on social media and I wear many hats. So I'm a mom, a sister, a friend, a servant, a daughter. So many hats and a sickle cell warrior. Yeah, I love that. So, before we get into what sickle cell is, why do you refer to yourself as a sickle cell warrior? Okay, so, sickle cell warrior the term is like all, or everybody who has sickle cell refers to themselves as sickle cell warrior, just because we're fighting. So it seems like every day, you're choosing to get out of bed, you're choosing to fight, you're choosing to say, okay, I have one more in me, I can keep going, I can keep thriving. So, yeah, so it's a continuous fight, continuous fight. Yeah, okay, we're going to get educated today, because I'm not exactly sure what sickle cell is, but that's what we're here for.

Before we get into all that, I'm going to ask you a few icebreaker questions, okay, the first is would you rather go on a Papa Balloon show the YouTube shows or let your siblings have your phone for 12 hours? Well, I think everybody knows my phone password, but I do want to go on the show. You do, I do, I was going to ask that. So if they had like a, because I saw this girl where she went on there and as soon as she said a man has to be a man of God, they were all caught in there. The demons were jumping out the name of Jesus, everybody was trembling, everybody was trembling. So if they could visit one place every year for the rest of your life, where would you go? Hmm, honestly, I love Mexico. Mexico, yeah, yeah, I feel like vacations. I love it.

The last one is what is your favorite quote and why? Oh, I think that changes over time. I think one that I've read a couple of times the last couple of weeks was you don't know the violence it took to get me this off, something around that lines. I've been getting like furrowed, but just because I feel like everything's a choice essentially. But just to get Pearl to what Pearl is now, it took a lot and backtrack so it used to be. It took a lot and backtrack so it used to be.

Be still, and that's from the Bible. Just be still and know that I'm God. I feel like me as a person. I'm super anxious. I'm always thinking or overthinking or trying to analyze something that has really nothing to do with me, like it's in His hands. Anxious, just always, like trying to prepare myself for stuff that may not even happen. And for the longest time, I still want a tattoo right here that said be still, and that's been my prayer, just to be still, be still Every time my heart feels like it's about to explode. Be still, fall, be still.

So a couple of weeks ago, something happened and my sister said, pearl, you're so calm. And I said it is what it is. Life goes on Like it doesn't even matter. And she was like I think that prayer you've been praying, I think you finally answered it. We're starting. Yeah, so, yeah, that's really good. Yeah, that's.

I love that quote too. You don't know the violence it took to become this soft and it's so powerful because it's like the people who are the most still. First of all, in order to be peaceful, you have to be capable of violence. If you're not capable of violence, you're not peaceful. You're just here, you're alone in the weeks. So it takes a lot to contain that and to constantly surrender to God. Like God I could, but I won't. Yeah, I won't. Yes.

So tell us a little bit more about your platform and what motivated you to start content creating, sharing your life, and especially the most vulnerable parts the sickle cell disease, I think, because nobody really shares it. Everybody asks well, me being West African, me being Liberian, sickle cell is so taboo. So I woke up and I was just like, wait, do I got AIDS? What's going on? It is a genetic disorder, but so sickle cell is so taboo, even though it's so like, it's so dominant in our community, like so many people have sickle cell traits and they don't even know they have it. So because of that, and people hide that they have it, I have friends who don't publicly share that they have sickle cell and I get it. Because people do look at you differently, you know.

But I think that aspect of it made me want to share. Like, hey, I have sickle cell, but then I'm also very normal, I'm very like I. I said I've read many hats Like I'm. This person just happens to have psilocybin as well, so I don't mind sharing, like, okay, I can go work out, I can go vacation, I can do all these things. And then also, hey, I'm in the hospital because I'm sick, yeah, yeah. So just to show that I'm very regular with a picture of psilocybin, yeah, and I respect that so much because I think we live in a culture where we make so many things that we experience our identity and you master separating it.

Like it's something that I have, it's not who I am and it's no shade or shame to anybody who feels desire to keep it private. But I think a lot of times it's more from a place of shame and guilt and people like you speaking up and saying no, like you say, it's not AIDS, it's not something you did wrong, it's just something that you have and you're living every day. Why not show people and you know, you don't know who's watching your videos Like man, I can get up and I don't even work out as much as this girl. And I ain't got no excuses, okay. So it's like just seeing you live life constantly. It motivates me. Excuse because you'll be out of the hospital and just go, go, go in life, alright.

So now we're going to get into exactly what is sickle cell. Okay, sickle cell is a genetic disorder, so you have to inherit both from each parent. So If you have a parent sickle cell trait AS, parent sickle cell trait AS and they come together, it's a probability. So out of five siblings, I'm the only one who's SS. That's sickle cell disease. Honestly, it's a game of chance, because you could have couples who are both AS and their children could be AS or nothing at all, or, like me, just one person and all it is is a disorder where our hemoglobin isn't delivering enough oxygen. So your body lives, flows, thrives of oxygen, so because of that, our hemoglobin gets sickled, not enough oxygen can go carry out through our body. So now when your blood cells get sickled, so blood cells should be round and juicy and fluffy to flow through your body.

If you have sickle cell, they're C-shaped and simple shaped and because of that they travel and they get stuck somewhere. So by getting my shoulder, then I start having pain, then I lead to a sickle cell crisis or anywhere in my body, because blood flows everywhere in your body. So wherever it flows, if it gets stuck, you enter a sickle cell crisis and all that is is basically necrosis. So that area is not getting good in the blood supply and over time you start having organ damage. You start having, you know, issues with your joints and stuff like that. Okay, so does it initially just feel like pain in that region? Or sometimes is it instant? It starts slow. So I'm in a Facebook sickle cell group and I think for the most part we kind of all share the same trait. But for me, if I start getting sick, it'll be like I'm cold and my ankle starts hurting and the next thing I know, okay, my hip hurts, my disc hurts, but it'll start very slow. You'll start feeling off. You can feel it. It Temperature changes, you feel it in your body and the next thing you know you're in a full-blown crisis and you can't control it. Sometimes you can catch it. You get pain medicine at home, you can hydrate, you can rest, and most times that's what I do, but at other times it's just beyond you where you have to go see it out there.

What are some things you think everyone should know about sickle cell? If you are black or brown, please know your genotype. Please know if you're AS or SS. Over 100,000 people are affected with sickle cell in the US US alone. So imagine Africa, imagine, like other areas. So if you're black or brown, please just know your genotype before you, like, get into a committed relationship. Yeah, and it becomes harder to. Okay, am I going to have kids with this person? Am I going to leave? What are we going to do to sustain us? Are we okay? Just not having kids? Just know your genotype. Know your genotype. And if you are going to stay with that person, medicine is so beautiful where you can still reproduce that person and make sure your kid comes out healthy. Just be aware. Know if you have sickle cell. Maybe you have sickle cell AS. Know if you're fine, you're just AA. Yeah, so how did you find out?

When and how did you find out you had sickle cell and what was your initial reaction? What was the reaction of those around you? Okay, so since you're born with it I think just from hearing family I was a crybaby and so they couldn't figure out why, you know, when I'm smaller than the rest of my siblings, so just short, being a baby, just big, head, tiny, looks sick. But they didn't know what it was. They just thought it was a crybaby and it was Africa, it was wartime. So I think my parents said they found out I had sickle cell disease when I was like one, one or two, yeah. So then they realized, okay, that's why she's always crying, because I, that's why she's always crying, because I was probably having sickle cell crisis. And I just thought, oh, she's crying again. But so they found out, like one or two, when I found out a really good understanding of what sickle cell was.

My earliest memory was my dad and I came to New York. It was like 1995. And I probably had the worst sickle cell crisis I could remember as a child and I was just like I'm going to die and if you know my dad, you would pray like you're going to die right now. He's going to pray you back to life. And I had to be like seven or six and I was so sick, we were in the hospital. I was just praying to die. I'm praying to die and this man's praying for life and y'all, just Y'all really gonna listen to me.

Yeah, so I think that's when I knew, okay, this is it that I can remember, like because I will never forget it, because I'm just like there's no way this could be my life. Yeah, yeah, wow, right, sis. So today do they look differently or are they just equally like maybe five years ago? Okay, but then you know, god is funny, god has a sense of humor. Because look, if I didn't get married young and had kids young, I probably would have got a steton Like take me out. But I think, because, like I love my family but having the responsibility of children, like you cannot leave your children. People can love your children, but nobody's Nobody's going to love your children like you love your children and my parents loved my children.

But with that being said, five, six years ago I had a hip replacement. It was like four hip replacements in the span of a year, so a botched one. He took me back in the OR, did it again. Then I found a better surgeon. He did that, but because the first surgeon had done so much damage to my hip that one got dislocated and I've never felt pain like that before To have your hip just linger out. But, yeah, and the ambulance came, it was like shaking, it was, oh my God, but it didn't go back. So just that whole process of him having to redo it, me going to rehab and, I think, just isolation. So I was in it myself and I think I read the whole book of Job and I was in there for myself and I think I read the whole book of Job and I was just like God, like the whole book of Job.

I was going through a divorce at that time, so it was just like I was just there, my family would come spend time with me, but once they go home, your mind is a battlefield. So you could read your word, you could take notes, you could pray this is the gospel music. But when you're there at 2 am by yourself in pain, you're like is this my life? Yeah, so I think that was like adulthood was the next time I felt like, okay, god, like this, is this what I want to do the rest of my life? Like it might look being pain and suffer the rest of my life. But yeah, I'm sorry, I keep saying, wow, it's just like. What do you say to that? You know what I mean, but I understand. No, I number one, like thank you so much for sharing it with us, and I don't know, it's just, you're so much bigger in my eyes, like you were already big, but now it's just like no, because like that's such, like that's real, like I've had certain.

I've had my battles in life, but they were. They were never physical, you know, they were all. They were always like mental battles. So like I understand what you mean when you say like when you're alone, it's just you and god. You're like, is this going to be my life forever? Yeah, and the courage it takes to just keep on showing up and especially, like not knowing if that thing will come back again.

You know, but you know, like being a warrior, like I'm gonna fight this thing, yeah, so what does treatment look like? Um, first of all, the knee blood. Okay, the knee blood. The knee blood, the knee blood. Uh, I've been very fortunate where I can count on my hands how many times I need a transfusion. Thank God for that. But there's warriors out there who is a wicked thing.

They have to go in and get blood donations, and black and brown people do not like to donate blood. Please donate blood. There's a taboo around it. Why, okay? So from the African perspective, I would say, like you know, we know about a lot of like juju and stuff, and like black even black Americans they don't trust the medical system. So it's like what are you doing with my blood? No, I don't understand why they don't trust it too. So, yes, so donate blood. A blood donation Treatment looks like one thing at the hospital.

So the more crisis, you have places where you have repeated crisis. So I have a left hip replacement Growing up. When I enter crisis it'll start my ankles, but my hip will hurt and it will hurt where I'm leaping for weeks. So that's less blood flow, that's less movement and then slowly, over time, that bone, that joint, dies off. So that's called necrosis, it's bone death, and when that dies off, that's low oxygen. Over time you're going to get that joint replaced.

So to just help make sure you don't get to that point, just hydration, make sure you don't enter crisis. And that looks like taking medications, taking your vitamins, taking what your hematologist gives you, keeping up with your doctor appointments, being stress-free as much as possible. So when certain things don't concern you, it doesn't concern you. Like, yeah, monitoring your business might save your life. It saves your life Because as soon as you enter that place where you're worried about a thousand things, it sounds crazy. But stress triggers crisis, temperature triggers crisis, so you really have to just be like right in the middle yeah, so, yeah, we're going to bring more of God into it.

So were there times, like you said, you read the book of Job and Job had his questions, and I think that's one thing I love about reading Job and just other people in the Bible where, like, it's not a problem to question God, like to weep and mourn in front of him. So how has it strengthened your relationship? And when was there times where you kind of were like God I don't know about this, or even you, I think it was, just he's my anchor. So when, I guess growing up in the church I don't know, my faith was a little different, because growing up in a church, it is always being. You're in the church, you believe in God. It shifts to when you get older where you're like, okay, I do believe in God, I am involved in the church, I do love God, because it's not as a conscious decision, where it's no longer you're forced to go to church or do whatever else, it's more so, okay, I'm going to wake up and have devotional. So, with that being said, it's a choice.

It's hard sometimes where it's just like, if I serve this good and loving God, why me? So I think for a while I used to question that because, like, why me? But you see my siblings Out of all of them, I'm probably best suited for sickle cell, because I hate to say it, but it's a shift in my mind. So, okay, why not me? It sounds really crazy to say, but why not me? Because I couldn't imagine Jodine or Musa or anybody else bearing this cross, because I don't know how they would take it or how they would manage it.

I think God has given me such a grace for it where, yes, I can be sick but at the same time, I'm so grateful to him for life, I'm so grateful to him that I can live another day, I can breathe another day. So, yeah, it's just been dependent on him. Honestly, that's very powerful. And that's very powerful Because a lot of times we can't ask like, why me? But it is a grace, like God has graced you for it, and if not you, then who else? My mom always says that she's like if not you, then who else? Because you, god, know that you can carry it. You're the one who can inspire, you're the one who can people's lives or motivations attached to your spirit of just willingness to share it and just be who you are. So, yeah, that's really beautiful. Thank you so much.

Is there anything else you'd like to add? It's just not even sickle-slave. If you're going through any health issue, it's so easy to say why me, you know, question God, question Him, read Job, question Him, cry out to him. But at the end of Job, when God blesses him tenfold, just know that whatever cross you're bearing, whatever it is that you're going through, there's a blessing at the end of it. It may not be material, but it could just be you impacting somebody else's life. You're encouraging somebody from giving up, like you're encouraging somebody to okay, I can fight, I can do this too, I can fight, I can do this too. I can also thrive with sickle cell, like it's more out there. So, yeah, all right, yeah, and that's real, that's real.

Bring God into wherever you are. We serve a God who will meet you exactly where you are, no matter how many questions you have, no matter how lost you feel. You just laid at the cross and he will meet you right there. Don't fall into the idea that you have to deal with things and then come to God. That's not the God that we serve. So, all right. Well, thank you so much for joining us, Thank you for being a part of the podcast, thank you for sharing and being vulnerable. You all can follow her on Instagram and TikTok. Go ahead and share those. Instagram at brownpearls that's B-R-O-W-N-P-E-R-L-S, and then TikTok at brown underscore pearls. What so much. I really hope that your platform increases and you're able to reach more people and just share your story, your testimony and your knowledge, because we just learned so much. The links of more information will be in the description. And yeah, see y'all next time, bye, bye.

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