Naziere “Naz” Evans has been in and out of the hospital more times than he can remember. Some of his stays lasted one week, while others up to two weeks. He’s even spent holidays in the hospital. Each time he was admitted, it was for the same thing – severe pain and anemia requiring transfusion caused by sickle cell disease; a condition that 20-year-old Naz was born with.
What is sickle cell disease?
When a person has sickle cell disease, their red blood cells are shaped like a sickle, or a ‘C’, while normal red blood cells are shaped like a disc. When red blood cells are shaped differently, it is difficult for them to move through small blood vessels and can get stuck, form clumps ultimately blocking blood vessels.
Unfortunately, this can cause people living with sickle cell disease, like Naz, a lot of side effects like: severe pain, fatigue, stroke, kidney failure, lung complications amongst others that result in a shortened lifespan. Sickle cell disease, sometimes called sickle cell anemia, is inherited.
Living with sickle cell disease
For Naz, living with sickle cell disease has impacted many aspects of his life, like school.
“Sometimes I would go to school feeling fine and I’d have a pain episode in the middle of class. I would try to fight through it and take my medicine,” remembers Naz.
Sometimes taking medicine at school or at home was enough to control the pain. But, other times, the pain was so severe Naz would need to be admitted to the hospital to receive medications through an intravenous line (IV). He’s spent holidays in the hospital because of sickle cell complications. However, those stays have been the most memorable.
“I would get gifts. When it was Thanksgiving, there was a big meal. The nurses and all the staff are really understanding and kind,” describes Naz.
In addition to pain episodes, sickle cell disease can also cause other serious problems such as infection and acute chest syndrome (ACS) — a life threatening complication. This meant COVID-19 presented a greater risk for Naz and others living with sickle cell disease until vaccines became widely available.
“When the COVID-19 pandemic started, I had to stay inside all the time. I caught COVID once and thankfully I didn’t experience any severe symptoms or issues,” Naz said.
Treating Naz’ sickle cell disease
A stem cell transplant is currently the only approved therapy to cure sickle cell disease. Unfortunately for many patients, including Naz, this is not an option as a matched bone marrow donor is not available.
Gene therapy, which is still in clinical trials, is a similar type of therapy that is intended to cure sickle cell disease for those who don’t have a bone marrow match. Naz is currently undergoing evaluation for a gene therapy trial. If successful he won’t have to suffer through pain crisis and the many risks of living with sickle cell anemia lifelong.
In the meantime, Naz has learned to manage it with the help of The Kid Experts® in Children’s Minnesota’s nationally recognized Hemoglobinopathy and Sickle Cell program.
“Naz is an amazing young man with life goals like many other young adults. He works so hard to try to minimize the impact sickle cell has on his life and yet, there is only so much he can control,” describes Dr. Stephanie Fritch Lilla, Naz’ hematologist and medical director of the sickle cell program.
Dealing with his disease can be hard at times but Naz won’t let it stop him. Dr. Fritch Lilla shares a recent experience that shows Naz doing just that:
“Recently, despite being in immense pain, he didn’t want to be admitted to the hospital as he had a job interview later that afternoon. It was clear he wasn’t going to be able to manage the pain at home and we recommended he be admitted. Thankfully, we were able to work with our onsite Geek Squad to get a laptop that he could use to complete his interview in the hospital. Naz’s determination and good-natured personality has touched the lives of so many people here at Children’s Minnesota.”
As sickle cell treatments advance, Naz says it’s becoming easier to manage the pain and other complications. Next up, he plans to pursue his goal of becoming an engineer. His message to others living with sickle cell disease – keep going.
“At times you may feel depressed or helpless but fight through it. That’s easier said than done – but you have to find the strength.”
Sickle Cell Awareness Month
September is National Sickle Cell Awareness Month, a time to increase understanding of the disease, the challenges patients and families experience and to call attention to the need for more research and treatments. Sickle cell disease is the most common inherited blood disorder in the United States. According to the Centers for Disease Control and Prevention (CDC), the disease occurs in about one of every 500 Black or African American births and about one out of every 36,000 Hispanic American births.
Make a difference
Shine Bright for Kids is a fundraiser for the cancer and blood disorders program at Children’s Minnesota, which cares for more than 3,500 kids — from babies to young adults — every year. Your support can make a difference for patients living with sickle cell disease, like Naz. Your gift supports everything from special therapies to life-saving research to mortgage and rent relief. Donate now at childrensmn.org/shinebrightforkids.