The Sickle Cell Disease Patient Journey - Episode 4
A patient with sickle cell disease explains how growing up with the sickle cell disease has impacted his quality of life.
Ifeyinwa Osunkwo, MD, MPH: Jamaal, how has sickle cell disease impacted your quality of life? How have you dealt with sickle cell disease over the past several years? How do you cope when you have an acute problem, acute pain crisis, or you’re in the hospital? How has it affected you as an individual?
Jamaal Bailey: As an individual, I’ve had to start and stop college several times because of sickle cell and pain. I’m often not able to get assignments in on time when I’m in the hospital or in pain. You’re not able to do as much as your friends and other people. Sometimes I feel like I’m behind them because they get to move at a faster pace than I do. It affects that, and it affects my day-to-day life. Sometimes I’m unable to do what I need to do because I’m in pain or I have appointments that I have to go to. That’s really how it affects my life. I also have to go to the emergency department, and I’m hospitalized a lot. Those are things I have to deal with.
Ifeyinwa Osunkwo, MD, MPH: How do you cope with this? How do you manage the emotional impact of this destruction, unpredictability, and being behind from no fault of your own? You try, but sickle cell interferes with things you want to do on a day-to-day basis.
Jamaal Bailey: I pray. Sometimes I cry. I have to talk to a lot of people to explain my emotions. I talk to my mom and my friends.
Ifeyinwa Osunkwo, MD, MPH: That’s very good. I applaud you for getting those feelings out and talking to people. That’s something we can have our audience learn. Sometimes it’s hard to deal with this, but when you talk to other people, it does help lighten the burden a little. Jamaal, has having sickle cell disease affected your personal relationships, like friendships, relationships, your family, relatives, work, or school?
Jamaal Bailey: It has. It doesn’t really affect my friendships, but if I tell people whom I want to be in a personal relationship with a lot of what’s going on, it does affect that, because I don’t want people judging me or anything like that. As for school, yes, it does affect me. But I’m slowly moving through school. I understand that I have to go at a slower pace. It definitely does impact every aspect of my life.
Ifeyinwa Osunkwo, MD, MPH: Thank you for that. I have 1 other question as a follow-up. Is there any special regimen or routine you follow to ensure that you maintain your physical, emotional, and mental wellness? What are the tips you use to stay OK, stay well, and handle all these challenges you’ve been experiencing your whole life?
Jamaal Bailey: I follow the regimen that Dr Wally Smith and the sickle cell team have given me. I also want to make sure I drink more water and don’t get stressed. I have to stress that a lot. You have to manage your stress, because that determines if you’re going to have a sickle cell crisis or not. Those are the tips that I could give.
Ifeyinwa Osunkwo, MD, MPH: Can you give me a quick, sure way of how I can manage my stress? Because that’s a really difficult thing to do.
Jamaal Bailey: It’s really difficult.
Ifeyinwa Osunkwo, MD, MPH: You figured it out. Can you share with us? You can make a lot of money from that.
Jamaal Bailey: As I said, I talk with different people. I’ve also found that it helps to make sure you do assignments earlier, so you don’t have to stress about work or anything like that. And you don’t want to be stressed at all.
Ifeyinwa Osunkwo, MD, MPH: Thank you so much, Jamaal. Sherry, how has Jamaal’s diagnosis with sickle cell disease impacted your life, both personally and professionally? I know you have sickle cell yourself. But now you’re the mom of somebody with sickle cell. I’m sure it has been a challenge. Share with us some of the personal and professional challenges you’ve gone through over the years.
Sherry Bailey: It was hard at first, but I knew I had to make him comfortable and everything. With a lot of help and prayer, we made it. I told him I have to take care of myself. I showed him how I took care of myself, so that he could do the same thing. Make sure you drink plenty of water. As he said, don’t stress about anything. Take your medications, drink plenty of water, and dress warmly. I didn’t go out in the cold. I didn’t want them to go out in the cold, because I knew what the cold would do. I try to keep them warm. And then I just prayed to God that everything would be all right, and he saw us through. Thank God for that. If it weren’t for that, all 3 of us probably would have been sicker than we are. I kept that faith. I knew we had to do better to keep from being sicker. I still implore that to them now: Make sure you drink your water. Make sure you stay warm and stay out of the cold.
I was sad some days when they got sick because I didn’t want to see them go through that pain. It was hard to see them go through pain. I cried many a day when Jamaal went to the hospital and was very sick. It just hurt me. But I got through it. We got through it. As I said, with my mom and everything, they helped me. If it weren’t for them, I wouldn’t have been able to help them myself. It was a lot of work. But thank God, he brought us through.
Ifeyinwa Osunkwo, MD, MPH: We appreciate and are so proud of all the effort you’ve put in to take care of Jamaal, his brother, and yourself. Jamaal, when your mama was having you drink your water when you were younger, did you listen to her?
Jamaal Bailey: Not much as a child. I remember being in elementary school, and the doctors would tell the teachers that I needed to drink water. We would actually have a bottle of water. I had this big jug of water in the school in the class. I can remember actually being embarrassed by it, for just not feeling like the other children. But as I got older, I did listen to her, and I definitely started drinking more water.
Ifeyinwa Osunkwo, MD, MPH: That’s awesome. That’s an important piece to highlight. Sometimes, young people don’t want to be different from their peers. Even though they know the water is good for them, it’s hard to stand out. You want to blend in when you’re at that age, and it can be a tough situation. But he’s learned, Mama, so you should be proud of him. He’s drinking his water now, so he’s doing much better.
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Transcript Edited for Clarity