Living Life to the Fullest With Sickle Cell Disease

Jemela Williams: Dr. Fasipe, as a warrior yourself, what advice would you give to sickle cell warriors or patients on living life with sickle cell disease? What have you found most helpful in living your life to the fullest?

Dr. Titilope Fasipe: We all have different personalities, different strengths. I know my weaknesses and strengths, and that's one way, trying to know yourself, know where your limits are. And as you're growing, you don't always know what your limits are, and sometimes they change, which can be a little frustrating. We all have different personalities and different strengths and weaknesses. And so it looks different.

Dr. Titilope Fasipe: Living life looks different depending on who you are, but you slowly start to realize, well, this is my sickle cell disease, and these are the things I can do very well. And these are some of the things I struggle with. And then there's things that, you know what? I do want to sacrifice. I know this is going to take some energy and time, but because I want to spend time with this group of friends or this particular experience, I am going to figure out how to make this sacrifice or risk work the best for me. And we've all done it, right? Stay up a little bit later than we should because you want to be there for a friend, hang out with people that you love, do some experiences that maybe you wouldn't have done if you were by yourself.

Dr. Titilope Fasipe: We've all pushed our buttons, our boundaries a little bit, and we learn the good and bad of that. Sometimes we find ourselves doing an experience that we're grateful for. And sometimes we learn, okay, maybe that was a little too far and I need to be careful the next time. So I am still learning. At work, I have to do this intake survey where it's like, okay, I think you've overloaded your plate again. And okay, let's try to figure out what to take off your plate, or you need to go and email those people or respond back that you got to get more time. I was in a different conversation where I was like, figure out what the 504 plan is for that stage of life.

Dr. Titilope Fasipe: For those that don't know what that is, a 504 plan is a plan for children in school for accommodation. So if you have sickle cell disease, a common thing on a 504 plan is allowing them to carry a water bottle, bathroom breaks, allowing them to have more time between walking to classes. So every stage of your life, you're going to need accommodation sometimes, and it's okay. It doesn't mean you're weak. You're trying to figure out how to do the same things other people do with the fact that you have sickle cell disease. So you might need to think differently with how you approach your work and have those conversations with your immediate supervisors or someone you trust. So that's kind of the best recommendation.

Dr. Titilope Fasipe: I would say, be yourself and figure out how to balance the things that you enjoy with a healthy quality of life. And then one of the goody two-shoe answers, of course, is please, please, please, please, please. And this is as a doctor too. Try to find a doctor who you trust and that can help you. That may not be a hematologist. Some people have doctors who love them and have cared for them that are family medicine doctors, they're childhood doctors, and let those people know that there's new guidelines for sickle cell disease, link them up to that, and they can kind of do the rest. They can figure out how to get you some of the care that you might be reading about online.

Dr. Titilope Fasipe: And so try to have a relationship with a doctor that knows you best so that someone has accountability of your healthcare plan. You are the owner of your healthcare plan, but they should have accountability to make sure that people are treating you right as much as possible. And the things I found helpful is having support from loved ones. My parents' prayers have gotten me through so many things in my life, so I'm grateful to my parents. And now that I'm older, some of our caretaking roles are sometimes reversed, like my dad has healthcare challenges now and my mom has had challenges, but there's still a support system to me and my siblings and my friends and my husband, whoever you consider your circle in your village, those are people that infuse joy in your life and they help you just be happy and have that high quality of life. And then try to do things that maybe explore what that looks like to do things outside your comfort zone. For me, I was more of that scaredy cat kid, so traveling, I was sometimes nervous about, but now I've been able to travel.

Dr. Titilope Fasipe: I've learned how to travel safely for myself, and that's been an area where I've grown, and I'm grateful that I was brave enough to finally do those experiences. So I would love to ask you the same question too, like I think all of us can learn from each other, and I'm just glad that I've had this opportunity What is your secret?

Jemela Williams: Thank you, Dr. Fasipe. I would agree when you say find what works for you. Just like you said about support, your parents being your support, I am an only child raised by a single parent. So my mom has been a huge support throughout my life. And I had a bout with depression after I lost some friends with sickle cell and some years down the road, I was kind of without friends with sickle cell after that because the friends that we did have, we kind of grew apart after the other two friends passed away. And I found our local CBO, Sickle Cell Midwest. And I think the first person I met, I finally persuaded myself to go to the support group because I'm so shy still. And I was like, oh, should I go?

Jemela Williams: I don't know. And so I finally pushed myself to go to the support group and Kevin Wake was the first person I met. And it's kind of been, he's sort of still my mentor. And just seeing him, I think he was in his 40s then, Kevin is now 56. And I think he is such an inspiration. I'm always asking him like, where do you get the energy? Because you do so much. And I'm like, Kevin, sit down.

Jemela Williams: Like, we love you. We love what you're doing, but sit down because he's always traveling. And I think just seeing him and being around him and growing our support group, which became online during COVID. And so we've had people join from South Africa, Nigeria, London, California. And some of those people are still in our support group and just seeing him and seeing everybody just play to their strengths, stepping outside of their comfort zone, like traveling that, just like you said, I was very scary about traveling, but I know one of my tricks now is to ensure that I have wheelchair access always on whatever ticket I have. Because walking is definitely one of my weaknesses and just being able to see these people from around the country and different states, like living their lives every day. I'm not a parent, but seeing them parent with sickle cell and just have careers and everything that I feel like fills my glass more than half for seeing all of them and just having them as inspiration.

Jemela Williams: So my sickle cell support group keeps me going. They called me the glue actually, because I'm always like reaching out to people like, are you okay? How are you doing? But that makes me feel good. So I think seeing other people, helping them kind of helps me live my life to the fullest.

Dr. Titilope Fasipe: Yeah, I love that. And it's funny, I'm part of community-based organizations from that kind of organizational, okay, let's throw an event, let's do things, but where do I get support is really the support group level. So I'm part of three WhatsApp groups that are different sickle cell groups, depending on the stage. For various reasons, I have three, maybe even more actually, but three more active ones. And it's just good to know that we have each other. We're not like organized meetings, nothing like that. One is very active and always shares helpful things. But the other one is like, let's do brunch sometimes.

Dr. Titilope Fasipe: Or something just happened. Did y'all see that thing about sickle cell or did y'all hear about this? And one of them just called me the other day actually. And so I completely agree with you. We started early on by talking about that kindred spiritness of having sickle cell and knowing others. And I'm glad that we're actually ending on that same thought. That has probably been one of the single most important things in helping me find purpose and inspiring me, like just seeing people doing it, living life from that moment I met my cousin who was the first person I met with sickle cell disease in my family house.

Dr. Titilope Fasipe: I had never known anybody else with sickle cell disease when I was a younger child. So meeting her was life-changing. And then the more people I continue to meet, it's just been this collective strength that I have gleaned from. And I'm so appreciative and grateful for. And so God bless you, and God bless every warrior that's listening. And I just continue to pray that you stay healthy and that we all continue to do well.

Jemela Williams: Thank you so much, Dr. Fasipe. This has been really wonderful. Thank you for joining us.

Dr. Titilope Fasipe: Thank you.