Sickle cell anemia is a hereditary blood disorder that most commonly occurs in people of African, Central or South American, Caribbean, and Mediterranean descent, according to the National Heart, Lung, and Blood Institute.
The Institute also reports that an estimated 70,000 to 100,000 people in the United States suffer from the disease, mainly African American. With the proper health care and a healthy lifestyle, people who suffer can learn to manage living with the disease.
“It’s gotten better as I’ve gotten older,” Alexandria Bowman, Memphis native and freshman early childhood family studies major at University of Tennessee Chattanooga, said. “I stay on point with the regimen that my doctor gave me.”
Bowman was diagnosed when she was 2 years old. The disease was revealed in blood work from her frequent doctor visits.
She said her family was surprised, but they took it well. Her mom had the sickle cell trait and knew she had it, but she had no idea that Bowman’s father had the trait as well. However, other family members have the disease, so they had additional support and resources.
When she first started suffering, Bowman would allow her mother to handle everything. From drinking enough water to taking her medicine on time, she always relied on her mom to get the job done.
“I used to want to ignore my regimen when I was younger,” Bowman said. “Ignoring it would make it easier for me to feel like everybody else.”
It took her 14 years to get a good handle on her sickle cell. At 16 years old, Bowman said she was finally at a place where she was able to manage it well. She would go into crisis much more in her younger years, resulting in her missing a month of school.
Being away from home, she makes sure she takes good care of herself and doesn’t put herself at risk. However, it still gets hard sometimes by being in the college environment.
“I can’t always do what everybody else does, like partying and staying out,” Bowman said. “I get tired easier than other people, so I have to watch what I do.”
Accepting her disease became a little easier for her when she once attended a camp at St. Jude. She felt let awkward around others who understood what she dealt with.
Maintaining physical health and garnering emotional support is key to managing the disease, said nurse and health educator Jacqueline De Fouw.
For them, staying hydrated is extremely important. It’s to carry water bottles so that they can access water, as needed.
Seriously maintaining a healthy diet and getting enough rest is also important, according to De Fouw. The diet should contain fruits and vegetables, whole grains, fat-free or low-fat dairy, protein, and low sodium intake. Because of the disease, they’re at risk of not getting enough oxygen in their blood, so ample rest would decrease the amount of oxygen the body needs.
Keeping the stress level balanced is one of the main things that are important for them to maintain. Increase stress may lead to a relapse of vasso-occlusive crisis, commonly known as “crisis”—when red blood cells block the blood vessel which can lead to a series of other health problems.
“The crisis are caused by red blood cells that have an abnormal, crescent shape that contain abnormal hemoglobin,” De Fouw said. “The points at the end of the crescent shaped cells grab together, resulting in severe joint pain, anemia, fever, and blood being cut off from certain body parts.”
Additional help in managing can be oxygen therapy and electrolyte therapy or replacement. Also, people with sickle cell are more likely to get infections, so it’s important to have their immunizations up to date, De Fouw said.
Like Bowman, multiple students balance the disease along with school, work, family, and other obligations. The crisis can bring incredible pain, but by combining a healthy lifestyle, having a regular doctor, and being surrounded by people who care and try to understand, they can lead a life that’s pretty much like their peers.
