S.6/E.16 

Sickle Cell (3 of 4 with Yemi)

Oluyemi ‘Yemi’ Moses was born in Durham, NC, USA to parents who immigrated from Nigeria. She was the middle child in a family with seven children; four of those children were born with sickle cell disease, and Yemi was one of them. Throughout her life she has stood firm on the belief that sickle cell would not diminish her life, and her life experiences attest to that.

 

She graduated from North Carolina Central University in 1998 with a B.S. degree in Human Sciences and moved to Brooklyn, NY, where she furthered her education and became a certified Special Education teacher. While in NY, Yemi taught Special Education to middle school students; she was an assistant basketball coach and helped to create and coach a cheer-leading squad. She also organized and led an HBCU (Historically Black Colleges and Universities) College Tour for the students at her school, among many other things. Her focus was always on the total child, so although she worked with her students to ensure that they excelled academically, she understood the importance of extracurricular activities and other opportunities for learning. In 2006, Yemi moved to Nigeria where she worked for an NGO (Non Government Organization) and taught at an international school. While in Nigeria, she had the opportunity to experience and understand her culture and this made a tremendous impact on how she views life. 

 

Upon returning to the US, she pursued her interest in clinical research and began assisting with the monitoring of clinical trials. Currently, she is a Senior Clinical Research Associate and has had the privilege to participate in trial studies where study drugs in these studies have been beneficial to the patient population, and subsequently approved by the US Food and Drug Administration. She consistently dedicates herself to her team to ensure that timelines and targets are met and has played a leadership role mentoring junior staff over the last several years. She prides herself in her ability to organize and is very detail oriented.

 

Of all the challenges Yemi has undertaken, and all the roles she has played, her most pivotal role has been the role of a mother, which she became in her early forties. Yemi enjoys spending time with her daughter and looks forward to the journey of motherhood.

 

Yemi continually explores her love of traveling and meeting people from different cultures. She has been blessed with the desire and opportunity to travel around the globe, and has many more places that she would love to see as she looks forward to a long and healthy life.

You can connect with Yemi on her Facebook Page: https://bit.ly/2BztNMg

S6E16 Sickle Cell with Yemi 

 

Lita T  00:08Hello, and welcome to another episode of podcast dx. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis I'm Lita 

 

Ron  00:19I'm Ron,  

 

Jean  00:20and I'm Jean Marie, 

 

Lita T  00:21collectively were the hosts of podcast dx. Our guest today is Yemi Moses, who will be sharing her story about life with sickle cell disease. Yemi is from Durham, North Carolina. One of my favorite cities in the United States. We're actually considering moving out there. 

 

Jean  00:40 Yep.  

 

Lita T  00:41Her parents came from Nigeria having seven children, four of whom have sickle cell disease. Welcome to the show. Yemi.  

 

Jean  00:49Hi, Yemi. And I know you have an incredible biography and we will make sure that we post that on our website.  

 

Lita T  00:55Oh, for sure. 

 

Jean  00:55 Yes. 

 

Yemi  00:56Okay. Perfect and good afternoon and Happy Saturday. I am privileged to be here with you.  

 

Lita T  01:01Thank you. 

 

Ron  01:02 Hi, Yemi and, like Jean, and Lita said thank you for taking time to join us today. In the past, we've had the honor actually of speaking with a number of individuals with different forms of sickle cell disease from, you know, different parts of the world. Could you tell us more about how sickle cell disease is inherited, and the more common form of sickle cell disease  

 

Yemi  01:29A person can't catch Sickle Cell disease from another person, like one would catch a cold or the flu, sickle cell can only be inherited from a parent and so to inherit Sickle Cell Disease both parents have to carry this particular trait. 

 

Jean  01:43Okay. And can you tell us a little bit more about the genetics involved with Sickle Cell Disease? 

 

Yemi  01:49Sickle Cell is the autosomal recessive disorder which means that both parents must carry the Sickle Cell gene for the child to have Sickle Cell Disease. And to carry the gene, the parent could still have Sickle Cell Disease or be carriers, which means they have the trait but not Sickle Cell Disease. 

 

Lita  Okay, so a parent might carry the disease but may not necessarily have it themselves, 

 

Jean  02:12right. Yeah, I think it's like kind of like blue. I mean, this is like a very broad comparison, but like blue eyes.  

 

Lita T  02:18Mm hmm, recessive? 

 

Jean  02:19. Yeah, it's more Yeah.  

 

Lita T  02:21Okay.  

 

Jean  02:22and, and, go ahead. 

 

Yemi  02:24 So my parents both have the trait. They came up in Nigeria. And back then. It wasn't. There wasn't a lot of exposure or education or even knowledge about Sickle Cell Disease, what it was and how it can be passed on. My mother and my father both have the  trait and so they in turn had four of us who have the disease. There are some situations where one person can just have the disease and another person doesn't have the disease or have the trait and it can be carried on so that differently that can be both parents have to have at least the trait.  

 

Jean  03:05Okay. 

 

Lita T  03:06Thank you.  

 

Jean  03:07Thanks. And Yemi How common is Sickle Cell Disease? 

 

Lita T  03:11Sickle Cell is widespread, it affects many races and ethnicities. It's common among African African American, Hispanics, Asians, Indians and people of Mediterranean and Middle Eastern descent. 

 

Jean  03:24I know we were talking earlier about how our world it's, you know, like people travel and it's, you know, it is more of a global community. So thinking about something being isolated from a particular area or region is kind of, it's not applicable anymore. Okay thanks. 

 

Ron  03:41Yemi, can you tell us are there any complications from living with Sickle Cell Disease? Is it something that gets better or does it get worse with age? 

 

YEMI03:52There are a lot of complications, of living with Sickle Cell Disease, you can have anywhere from Sickle Cell Crises, which is basically excruciating pain that can happen all over your body, it can be a one local area, maybe just your back, maybe your chest or it can be in your back, your chest, your arms, around everywhere. Pneumonia is a complication. Stroke is a complication which I had a stroke at age of 12.  

 

Jean  04:21Oh my gosh,  

 

Yemi  04:22Chest syndrome, acute chest syndrome, where basically it it really does so much damage to your lungs. So there are so many different complications. And in the past, sickle cell patients often die as a result of complications from organ failure and from infection. But today people that have Sickle Cell can live until their 50s 60s and beyond thanks to modern medicine.  I was traveling, last year, my family took a trip to Jamaica. And we all went you know, we definitely took different flights but we met up there and when I was on the flight I met a woman who, I don't know why I brought up that I had Sickle Cell Disease because I'm pretty private about it. Or in the past, I have been private about it. But I brought up that I have Sickle Cell Disease. And she started telling me about her aunt was 80 plus maybe close to 90 before she passed away from Sickle Cell Disease. So we're living much longer today. And I think that as we become more educated about disease, we've learned better how to manage it, during consuming a fluid getting enough rest and and away from stress, as much as possible, or precautions that we can easily take. And these are the things that help us manage our health more. And we also have to pay attention to the signs of Sickle Cell complications, like if you feel pain coming on, you know, sometimes there's a tendency to say, well, maybe it's Sickle Cell maybe it's not I'm not gonna do anything about it. You know, I'm just gonna let it go and go I Used to be like that as a youngster, but I'm older now more wise and I was I feel a little tingling of a pain. I just say, okay, and stop everything when we take whatever medicine I have just so it doesn't feel that it doesn't exacerbate. So the different things that we can do to exercise control of how we live with Sickle Cell Disease. 

 

Jean  06:21Okay, that's great. I guess yeah, the more you're familiar with it, and yeah, having control over your own health is vital. Is there an actual Is there a way to cure Sickle Cell Disease or correct it at this point? 

 

yemi  06:35Well, bone marrow transportation,  have been successful in some cases in curing Sickle Cell. The bone marrow donor is usually a sibling with the same bone marrow type as the patient. Unfortunately, there's only one in 10 Sickle Cell patients that are able to find a matching donor, my brother, because like you guys said at the begining there were four of us with Sickle Cell Disease in my youngest brother. He has a successful stem cell transplant a couple of years ago, actually April of 2018. He is very well now, in fact,  

 

Ron  07:14oh good!  

 

Yemi  07:14as of his last blood check about this time, he doesn't have any more Sickle Cells in his blood,  

 

Lita T  07:19wow!  

 

Yemi  07:19and all of his other blood counts are either normal. And fortunately, there are other treatments that have been successful in managing Sickle Cell Disease Hydroxyurea which is what I've been taking for the last twenty six years. I don't want to say the up and coming treatment, you know, but I'm still hearing the conversation about it as if it's new, but is not new. If they're really helpful and allowed me to live a pretty normal life as a Sickle Cell patient. 

 

Lita T  07:48Okay. Can you tell us about the future of gene editing treatment options for Sickle Cell? Have you heard about that? 

 

Yemi  07:58Just a little. I've heard of CRISPR its a gene editing and genetic engineering technique. And biology of virus genomes of living organisms may be modified. I heard last year a couple of years ago that they're doing it overseas. And I think I just read something a couple of weeks ago about a trial that they're doing in the Texas area. And I'm really trying to tap into it because it's something I'm interested in.  

 

Lita T  08:32Sure,  

 

Yemi  08:32but I haven't heard any. Yeah. 

 

Lita T  08:35So you, you say that the the trials here in the US are something that you might be looking into, right. 

 

Yemi              Yeah, actually try to participate in, my brother had a stem cell transplant, and so he used my sister's stem cells. They were 100% match unfortunately, I'm not 100% match with anyone. And so the other option I had was gene therapy, I think they call it just, they would take my gene and fix it or edited. And I think it's something similar to what I just mentioned, and then put that gene back in me and I will be cured of course, I will go through a process before the healing would happen. For me, unfortunately, I'm not eligible for any of those trials. Or, as of the time that I tried to participate, which was in the 2018. I wasn't eligible. So it's something I'm still gonna pursue because hydroxyurea has worked for me. But, you know, when I talk to my brother who no longer has sickle cell, he tells me he can walk up the steps without, you know, being winded or you know, he goes from one country to another country so often, you know, it's just, it's a it's a freedom that I would love to experience as well. 

 

Jean  10:02And I think it's a good reason for all of us out there to, you know, do the cheek swab and register as a bone marrow donor,  

 

Lita T  10:11right 

 

Jean  10:12 And because you could be sitting, you know, helping someone, you know, significantly improve their life. So everybody can go out there can go and do that cheek swab and see if you're eligible or match for someone. 

 

Ron  10:23In your bio Yemi, you mentioned you have a strong interest in research.  Do you want to tell us more? Can you elaborate on that?  

 

Yemi  10:31I'm a clinical research associate. So I monitor trial studies, which is one of the beginning processes of drug development. So before any drugs are approved by the FDA and sold in CVS or Walgreens, they have to go through a process where patients use them or trial them and then doctors monitor the safety and efficacy of the drugs in the human subjects. And it's funny because I was actually a child subject in 1994, with hydroxyurea, the doctors were testing the efficacy and safety of hydroxyurea in sickle cell patients. And they determined over the years and even then that it does work well for us. So it's funny how life is a full circle. You know, I started as a trial subject, you know, taking the medicine that 26 years later, I'm still taking helps me. And now I'm on the other end of it, and I’m helping to monitor trial studies for people who still do have health issues.  

 

Jean  11:33Wow. that's fantastic.  

 

Ron  11:35That's amazing. You also traveled to Nigeria, right? You did some teaching there. 

 

Yemi  11:41I did.  

 

Ron  11:42Can you tell us about some of the differences between the two countries in regard to sickle cell disease? 

 

Yemi  11:51Hmm, I can't really say I observed any major differences. Differences in sickle cell disease between Nigeria and here. One thing I can say is that I was hospitalized several times while I was in Nigeria with malaria and sickle cell crisis, all the sickle cell crises that came as a result of malaria, which growing up I never knew a sickle cell patient could have malaria. I was always told that if you have sickle cell, you can't get malaria. And you know, before I went to Nigeria, I've taken whatever medicine that they said prevents malaria, and I probably had malaria up to five times while I was there.  

 

Jean  12:32Oh my gosh!  

 

Ron  12:34 Wow!   

 

Yemi  12:34You know, it is crazy, which is one of the reasons I left because as much as I did love Nigeria, I love my life and malaria was not good for my life, I said, Okay, get out of there. If I ever have the opportunity to go back there. I definitely would but you know, in terms of my health, I have to protect myself. But you know, in terms of the treatment, or the differences between the two countries. They were able To treat me every time I was hospitalized, with no issues, there may be a difference in the medications administered. But during my last hospitalization in Nigeria, my doctor there in Nigeria worked very closely with my doctors here in the US. So I was glad that the doctors in Nigeria, you know, they reached out to my team, my home team, and then they took their advice, which they helped me to get better. 

 

Lita T  13:26Oh that's great!  

 

Jean  13:26 That's fantastic. And Yemi, what would you say is the most challenging part of being a patient with sickle cell disease, 

 

Yemi  13:35 being a patient, you know, sickle cell, and there have been some, you know, worst parts of, you know, me dealing with sickle cell. And it would depend on when I'm asked if it was when I was growing up, it would be back, you know, a lot of times, felt left out. And I couldn't participate in all these activities that I want it to, because of the fear of me getting sick you know, at a different time of my life. It will be, you know, going through the excruciating pain of a sickle cell crisis. And, you know, as much as we're getting medication in the hospital, the pain is is so deep that you feel like there's no relief, no way for it to get better. And sometimes it takes days or weeks to get better. You know, it could be a time that I could say I felt rejected by some, because of their feelings that being in a relationship with me, someone who has Sickle Cell Disease, could put them at a risk, a risk for them that they don't want to deal with. The stigmatized issue that we deal with as a result of having this disease is real. And then more recently, you know, it could be the loss of my sister who was my very best friend, and the loss of my younger brother. They both died from complications of sickle cell disease. My sister passed in 2017. My brother passed in 2019 That was so devastating for the whole family. So there's so many aspects of this disease and how it affects one. And you know if it's painful, you know? 

 

Jean  15:12Sure, I'm so sorry Yeah, 

 

Ron  15:13I'm sorry to hear that 

 

Lita T  15:14yeah. Sorry to hear about your loss.  

 

Jean  15:17And Yemi I understand that you have a daughter, I was just curious how old is she now? And does she also carry the trait or have sickle cell disease? 

 

Yemi  15:26So I have a beautiful two year old daughter who was turning 22 in September, you know how that is? 

 

Jean  15:34 Yes.  

 

Yemi  15:36She's my joy, my blessing, my surprise, my everything. And I've been so blessed to be able to have her as a part of my life when I was pregnant. My doctor was really like, Okay, are you sure you know, this can be you know, end your life? And I'm like, Yes, I'm sure I'm gonna continue to pray and trust God and believe because I know that it's something that I've always wanted. So, you know, I'm blessed and privileged to have her and she does carry the trait Her father was AA, and I am SS and so the two of us together, you know, we didn't have her. I mean, she's not a sickler, but she does carry the trait.  

 

Lita T  16:17Okay. 

 

Jean  16:18Okay. In a you were saying how, you know, depending on when if we were to ask, you know, at what stage in your life, what was the most challenging part of this? But what has been the most difficult part of this journey and how have you? What have you used, you know, like friends, family or other things to get through the difficult and challenging parts of living with sickle cell. 

 

Yemi  16:46I think getting to the place of acceptance for me has been like, that has been where I was able to break free and that has got about control. You know, it's me a while to be okay. And accepting of the fact that I have Sickle Cell Disease, I always felt like it was a curse that I never asked for I never wanted  it. And it was something that made my life so difficult and so painful, both physically and emotionally. But once I got to a place of accepting this disease then I began to exercise control over it. And I realized sickle cell is not a death sentenace, you can live a healthy life with the disease. I travel all over the world. I do things that still amazed my pediatricians and close friends, because I got to the place last year, I will not allow this disease to be a limitation in my life. I will not be allowed this disease to define my life. So I take the very best care of myself as a normal, you know, a healthy person would do. And as a result of that I live abundantly. So I think just get into a place of acceptance you know, has been a journey for me.  

 

Ron  18:04That's wonderful Yemi. Thank you for sharing that with us. How can our listeners learn more about you? Do you have any social media accounts, or anything that you can share with us that we can post on your behalf?  

 

Yemi  18:18And you guys could share my biography I'm on Facebook. I'm not really active on any of the other social media platforms, but you know, Facebook will be a good way to connect with me. My biography, you guys, 

 

Lita T  18:39Yes,  

 

Yemi  18:39will facilitate,  

 

Lita T  18:40right. Yeah, we'll post that on our website for sure. And what is your What is your Facebook I looked for you actually on Facebook, and there are quite a few with that name, so how do we know which one is you 

 

Yemi  18:58They're probably all me because I've been through these different phases where I'm like,  

 

Lita T  19:02Ohhhh 

 

Yemi  19:02 Okay, I'm gonna cancel my facebook account. So I have one. Olieyemi Moses, but my most current one is Yemi Moses. 

 

Lita T  19:10 Okay. Okay, so they were you I was gonna say, wow, there's a lot of people with that name (laughter) very Yeah, no, nice. Yemi. Do you have any tips hints or suggestions for our listeners something that you know has helped you get through the rough times that might help other people. 

 

Yemi  19:35I would just say mindfulness you know, living a life of mindfulness being mindful of your situation and it's not always healthy. You know, some of us deal with health issues. Some of us deal with emotional issues, some of us deal with, you know, different issues. And so just be mindful of who you are, where you are and what stage in life you are in and walk you know in a respect to that, oh, with respect to where you are, you know, if you have health issues, do what it takes for you to live a healthy life because we we are ultimately in control of the life we live. You know, we can say, we've been given this and something came on us. But even as that happens, you come to a place where you exercise control. You say, you know what, I'm going to speak life. Speak out, I'm going to speak. Laughter I'm going to speak love whatever you want to speak into life, be mindful about it, and take control of the life that you live in the way that you want to. 

 

Lita T  20:39That's beautiful 

 

Jean  20:40And that's great advice for everybody.  

 

Ron  20:41Great information. Again, Yemi, thank you so much for coming on and sharing your story with us  I'm sure I know. I learned a lot. I'm sure our listeners learned a lot by listening to you as well. 

 

Lita T  20:56Yes, thank you. 

 

Jean  20:57Thank you. Yemi. 

 

Yemi  20:58Yes, again, Thank you guys for having me on  I've always wanted to share my story. And like I said at the beginning, I've always been very private, my life and myself, and I've always wanted to make an impact. And so how can you make an impact if your private the two coexists? And so,  

 

Ron  21:21Well you certainly are 

 

Yemi  21:22 yeah, just having the opportunity to share my story that so many people, millions of people are dealing with, you know, what a sickle cell or something I was just having an opportunity to share my story means a lot and I thank you guys for allowing me to have this platform. And I just want to say to everyone listening, please continue to stay healthy, eat healthy. You know, we know that dealing with COVID-19 events that we need to take care to keep ourselves healthy. So I just encouraged us all to stay healthy and you know, enjoy this time with your family, your loved ones or even yourself. 

 

Lita T  22:02excellent advice again. 

 

Ron  22:05Yes. Thank you. Thank you. And if our listeners have any questions or comments related to today's show, they can contact us at Podcast  dx @yahoo.com through our website podcast dx .com Facebook, Twitter Pinterest, and also on Instagram. 

 

Jean  22:26And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment and always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a  medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice related to it because of something you've heard in this podcast 

 

Lita T  22:45till next week.