Sade’s unstoppable spirit: Defying sickle cell disease, embracing life and achieving goals

Sade McGrew, a recent college graduate, has been living with sickle cell disease for 22 years. Since she was a baby, she has been under the care of her pediatric hematologist, Dr. Lolie Yu at Children’s Hospital New Orleans. Routine follow-ups have become a normal part of Sade’s life.

“When I see Dr. Yu, I’ll get a blood test to check on my hemoglobin and ferritin levels, which include my iron and my red blood cell counts to ensure everything is normal,” said Sade. “Dr. Yu also checks my eyes and adjusts my medications as needed based on how I respond to treatment.”

Sickle cell disease is a genetic blood condition that occurs when individuals inherit an abnormal hemoglobin gene from both parents. Although there is no cure available, this condition is treatable.
“Effective management of sickle cell disease involves close monitoring, addressing complications promptly, optimizing treatment plans, and prioritizing the patient’s overall well-being,” said Dr. Yu. “Sade’s routine follow-ups have played a crucial role in providing comprehensive long-term care for her which has helped her manage her sickle cell symptoms and allowed her to pursue her goals.”

Living with sickle cell disease

For Sade, living with sickle cell disease has been a difficult journey filled with many challenges.
Unlike people with normal red blood cells, Sade’s red blood cells are “sickle” or crescent-shaped, which hinders their movement through the bloodstream. This can lead to painful episodes, called pain crises, in the affected organs and tissues when the sickle cells get stuck in the blood vessels.

“The pain is absolutely excruciating but I have learned to manage my symptoms by avoiding extreme temperature changes and being cautious in my daily activities,” said Sade. “If it is hot outside and I walk into an air-conditioned room, I have to bundle up in a hoodie or a sweatshirt and sweat pants, so I won’t get a pain crisis. Even when I was in school, I couldn’t be outside for recess very long because the change in temperature hurt my joints. I love to swim but because of my sickle cell disease, I can’t jump into the pool right away. I have to sit on the edge of the pool and lower myself in every few minutes so my body does not go into shock and cause a crisis.”

The reduced blood flow caused by sickle cell-shaped red blood cells can also damage various organs in the body, such as the lungs, kidneys, liver, and spleen. Sade had to undergo surgeries at a young age. When she was 2 years old, doctors removed her spleen, and a year later, she had another surgery to remove her gall bladder due to complications. Without a spleen, her immune system became weaker, making her more susceptible to infections.

As a child, Sade faced limitations in participating in extracurricular activities due to her frequent illnesses. Between the ages of 5 and 12 years old, she had to endure chronic blood transfusions every month, and experienced recurrent upper respiratory infections including severe bouts with pneumonia and acute chest syndrome, a group of symptoms that occurs when sickled cells clump together in the lungs. Despite her challenges, Sade’s determination and resilience never wavered.

“As I got older, my pain crises were less frequent,” said Sade. “Although I still experience pain, I’ve learned to control my symptoms with medications. Dr. Yu has been very proactive in my treatment. If she sees something concerning early on, she gets ahead of it before the condition gets worse.”

Sade’s daily treatment regimen includes medication such as hydroxyurea to prevent her red blood cells from sickling, folic acid to support the production of new red blood cells and to relieve joint pain and inflammation, and penicillin to reduce the risk of infection due to her missing spleen.

In January 2023, Sade experienced a pulmonary embolism, a complication from her sickle cell disease where blood clots form in the lungs and can travel to the legs, blocking blood flow.

“The blood clots were not big enough for them to be surgically treated,” said Sade. “So, Dr. Yu put me on blood thinners and I take that twice a day. I’ve been taking them for about three months.”

Sade says while her sickle cell journey has been a bumpy road, she says her family, friends, and Dr. Yu have helped give her strength. “Dr. Yu has been there for me throughout my entire life,” said Sade. “When it comes to my sickle cell care, it is her number one priority, and that means a lot.”

A heart of gratitude

For the past 22 years, Sade has been filled with nothing but gratitude for the exceptional care and treatment she received from the Center for Cancer and Blood Disorders at Children’s Hospital. Dr. Yu and her team played a crucial role in helping Sade manage her sickle cell disease symptoms, empowering her to pursue her academic aspirations, and achieve remarkable accomplishments.

On May 12, she graduated with a bachelor’s degree in political science from Southern University in Baton Rouge. She already has a job lined up. She will be moving to North Carolina, to serve as a political analyst for Bank of America’s Corporate Center with other plans down the road.

“Outside of that, I still plan to go to law school to become a sports lawyer,” said Sade. “I have many goals to achieve and I’m not letting anything – not even sickle cell – get in the way of it.”

Her encouraging message to other patients and families struggling with sickle cell disease is this:

“Don’t let it stop you. I know it can be physically and mentally hard – but don’t let it stop you from achieving your goals or following your dreams. You can do anything if you believe in yourself.”

The Center for Cancer and Blood Disorders at Children’s Hospital New Orleans treats more than 1,100 children each year like Sade. For more information about our program and services, visit Hematology & Oncology | Children's Hospital New Orleans (chnola.org)