The Sickle Cell Disease Patient Journey - Episode 17
Wally Smith, MD, shares his take-home points for patients with sickle cell disease and urges to get tested for sickle cell trait.
Ifeyinwa Osunkwo, MD, MPH: Dr Smith, from a physician’s perspective, what take-home messages do you want to share with our audience?
Wally Smith, MD: The patients have done an excellent job saying what self-care patients need to do to make sure they don’t get the complications of the disease. You heard the science. You heard Sickle Cell 101. You’ve got to drink fluids to keep the cells from sickling. You have to stay hydrated. You have to get oxygen in your body to keep the cells from sickling. Don’t climb mountains and don’t scuba dive, because that’s going to cut your oxygen. If you’re going to fly, you might want to take oxygen with you.
You’ve heard them say, “Eat your vegetables.” That was pretty profound. Diet matters. Folic acid is a vitamin that patients with sickle cell disease take. You can get that in food. High-folate foods are important. A prudent diet is important because you want to keep your body well maintained. You heard, “Take your medicine.” These are all very basic but fundamentally important things. If you don’t like your medicine, talk to your doctor about it rather than just not taking it, because you could be doing damage to your organ. You might end up with something far worse than what you originally had. Take your medicines, and talk to your doctors about your medicines. Then seek out education.
I also want to talk to the people out there who don’t know their sickle cell status. They don’t even know if they have sickle cell trait. Please find out. Find out your sickle cell status. Get that hemoglobin electrophoresis done so you can say for sure whether you have the possibility of passing this disease on to your child. If you have sickle cell disease, you don’t need a hemoglobin electrophoresis to figure that out. There’s a possibility of you passing it along.
If you have sickle cell trait and you know it, you need to be sure before you have a baby that you have a discussion with your mate about whether they have sickle cell trait. Because the 2 of you, if you have it, may pass the disease along to your child. I’m not telling you not to have a child. I’m telling you to take everything with your eyes open. I want to make sure patients understand that we’re not telling them not to have babies, but we’re also telling them to be smart. There’s this phrase, “Be sickle smart.” To sum it all up, the patients have said it best. I’m not sure who originated this, but I heard a patient say, “I have sickle cell disease. Sickle cell disease does not have me.”
Ifeyinwa Osunkwo, MD, MPH: Amen. That’s true. Do I have an agreement, Jamaal? Do you agree with that?
Jamaal Bailey: Yes, I agree with it.
Ifeyinwa Osunkwo, MD, MPH: How about you, Cassandra?
Cassandra Trimnell: Absolutely. One hundred percent.
Ifeyinwa Osunkwo, MD, MPH: And what about you Sherry?
Sherry Bailey: One hundred percent.
Ifeyinwa Osunkwo, MD, MPH: We’re going to give Jamaal the last word because he’s the star of this show. Jamaal, you have a minute or so to tell the audience anything you want to share with us. We want to listen to you because you’re the rock star here. Go ahead and give us your words of wisdom for doctors, patients, advocates—anybody you want. You can do all of them.
Jamaal Bailey: For the patients, I just want to say to listen to your doctors. Also, listen to yourself. Listen to your instincts and what your body is telling you. Always listen to that. For the doctors, I want to say to listen to your patients. Sometimes they don’t exactly tell you what’s going on. You may have to ask sometimes. Sometimes patients are looking for you to ask a little more.
Ifeyinwa Osunkwo, MD, MPH: How about to your mom?
Jamaal Bailey: I would like to say thank you for supporting us. I would also like to say that sometimes you have to listen to your child also. Your child, especially with sickle cell, sometimes doesn’t like to tell you everything. You definitely have to listen to them and talk to them gently to make sure you get everything.
Ifeyinwa Osunkwo, MD, MPH: Thank you so much, Jamaal. Your mama has heard you, because she brought that up first. She said, “Listen to your child.” You must have told her that before. She got that. Thank you so much. To sum everything up, it’s about listening. We have 2 ears and 1 mouth for a reason. Even though I like to talk a lot, I need to use my ears more as a physician. All providers need to use their ears more and also their eyes. You can listen with your eyes. You can sense by looking, perceiving, and watching when your patient has more to say, or when they’re not giving you all the information. That’s a skill. If you’re going to work in sickle cell disease, you really have to work up that muscle, where you’re listening with all your senses and not just your ears.
The goal of this meeting was for us to hear from you about how sickle cell impacts your life and how we can do a better job of supporting this community as providers and as a general population. Thank you so much. Thank you, Dr Smith. Thank you, Sherry. Thank you, Cassandra. And thank you so much, Jamaal, for giving us your time and attention. We appreciate you.
Jamaal Bailey: Thank you.
Ifeyinwa Osunkwo, MD, MPH: Thank you very much for watching this HCPLive® Cure Connections®. If you enjoyed the program, please subscribe to our e-newsletter to receive upcoming programs and other great content right in your in-box.
Transcript Edited for Clarity