What Is Your Sickle Cell Disease Management Plan?

Dr. Ify Osunkwo of Levine Cancer Institute/Atrium Health discusses what patients can expect related to sickle cell disease management in the near future. Dr. Osunkwo emphasizes the importance of patients being proactive with their disease management plan in order to maximize quality of life and the effects on one's mortality while living with sickle cell disease (SCD).

Director of the Sickle Cell Disease Enterprise, Levine Cancer Institute, ASH 2019 Sickle Cell, SCD pain, SCD physical, SCD, acute pain episode, premature mortality, sickle cell disease management plan, Ify Osunkwo

About this expert

Ifeyinwa (Ify) Osunkwo, MD, MPH

Director of the Sickle Cell Disease Enterprise

Levine Cancer Institute, Atrium Health


Q: What can patients expect related to sickle cell disease management in the near future?

Dr. Osunkwo
So, our patients should expect that we will begin to talk to them about, “What is your disease management plan?” I want to start a campaign about, “You need to have a disease management plan, no matter what genotype you have. What are you doing to treat your disease regardless of whether you have pain?” 

Dr. Osunkwo:

There is a misconception that if you don’t have a lot of pain crisis, you don’t have severe Sickle Cell disease -- but I have patients who have had no pain episodes, but they’ve had a stroke, they have had liver damage, they have pulmonary hypertension, they have leg ulcers. And they may be well for 20-30 years and then they start getting sicker in their 30s and 40s, and they still have a premature mortality. And so, patients should expect to be asked and to be engaged in the conversation around, “Be proactive to develop with your provider a disease management plan that will take care of you for the long term.” Just like for diabetes, you wouldn’t say wait until your sugar is in the 600s to get treatment. You want to catch things early and really control the effect it has on your body and on your mortality.


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