“Sometimes it feels like a thousand needles are being poked into you at once, like that initial pang when you jam your finger in a door…the pain does not go away for days. It feels like you can’t get air in your lungs and that your chest is closing in.”
This is how Anne Alfa, a 24-year-old Nigerian-American woman from Maryland, describes a sickle cell pain crisis. Having suffered hundreds of these unbearable crises throughout her lifetime, this is a sensation that has become routine.
Alfa, diagnosed with sickle cell disease (SCD) at seven days old, had her first pain crisis at just three months old. Since then, Alfa has had multiple hospital stays for complications of the disease.
Sickle cell disease is an inherited blood disorder. It causes blood cells to be misshaped, leading them to occlude vessels, disrupt blood flow throughout the body, and deprive vital organs of oxygen. When this occurs, it is called a “vaso-occlusive” pain crisis, manifesting in complications such as stroke and lung problems.
One of the most common inherited conditions, sickle cell disease impacts about 100,000 people in the United States. Those of Black and African descent are disproportionately affected, occurring in one in every 365 births among this population.
For Alfa, emergency department visits for pain and acute chest syndrome defined the majority of her childhood. Frequent doctor’s appointments and monthly blood transfusions replaced playdates and sleepovers. Simple falls led to severe swelling episodes. Swimming or playing in the snow was off limits as sudden temperature changes could precipitate an incapacitating pain crisis.
“I don’t even know how I passed middle school since the majority of it was spent in the hospital,” she says.
Every year of high school was defined by having to receive a different surgery. In 11th grade, while peers prepared college essays and picked out prom outfits, Alfa was on the operating table getting brain surgery due to SCD complications.
Her sickle cell disease is unfortunately more severe than most. Some people with the condition may go years without having a pain crisis. For Alfa, she is lucky if she goes a month without one – some months, she has even had three.
Sickle cell disease has not only impacted Alfa physically, but it has also impacted her mentally. A 2017 study showed that almost 40% of adults with SCD experience depression. Many face issues with self-esteem due to stigmatization from peers and from the healthcare system as a whole.
“I felt like I was ugly…I felt like my scars were disgusting,” Alfa reflects. While in second grade, she vividly recalls having a PICC line in her arm, a catheter to deliver antibiotics, for four months to treat a bone infection. Alfa was so adamant about covering it that she wore a winter coat to school in the middle of August.
She was often made fun of as she spent the majority of high school standing at less than five feet tall due to delayed puberty, another complication of the condition. She was frequently jaundiced, leading peers to question why she had yellow eyes. One of her ex-boyfriend’s mothers even cautioned him about dating her due to her chronic illness.
After spending 20 plus years in and out of the hospital, Alfa’s doctors felt like she would be a good candidate for a bone marrow transplant. Known as a common cancer treatment, it is the only known cure for those with sickle cell disease.
“I didn’t even want a transplant,” she says. However, after reflecting on the fact that she could barely pass her college classes due to the severity of her condition, Alfa finally agreed to it. The following months meant attending over 100 appointments. She endured multiple invasive procedures including egg harvesting, dental work, and psychological testing in preparation. At any point, she could receive a call that she should head to the hospital to get the transplant.
Three years and six canceled transplant sessions later, Alfa finally got the long-awaited procedure in September 2022 at John Hopkins Hospital in Baltimore. She received about one week’s worth of chemotherapy and radiation to wipe out her immune system prior to receiving the donor bone marrow.
As many cancer patients can relate to, a defining moment of the transplant process for Alfa was losing her hair. “[As a Black woman] my hair means a lot to me. I had to come to terms with losing it very quickly,” she recalls. Alfa had actually just gotten her hair braided and planned to have the style in for three months. However, because she was informed about receiving the transplant at the last minute, she had to take out the protective hairstyle just three weeks after getting it done. After removing her braids, Alfa preemptively cut off her afro in anticipation of it falling out.
“I always had a hat on because I didn’t feel pretty,” she says. She experimented with a wig and alternated between wearing 30 different turbans and hats. From there, she dealt with a number of other significant changes. Losing about 40 pounds due to nausea and thrush, Alfa could barely recognize herself and avoided FaceTiming her friends and boyfriend. In an effort to make herself feel better, she had one of her best friends do her makeup. What she didn’t expect was the impact of chemo and radiation on her complexion – she needed a completely new foundation color.
Throughout and after the transplant, she was so immunocompromised that hanging out with friends, traveling, and going to weddings was out of the question. “I was depressed. I was very depressed,” she recalls. Alfa luckily had the support of family and friends who skipped class or called off work to visit her in the hospital, behavior that she playfully chastised them for.
In the end, her bone marrow transplant was successful. Her beloved afro began to grow back a few months later and she gained back the weight. She also saw marked improvement in her self-esteem and mental health. Although Alfa is officially “cured” from sickle cell disease, she still endures the effects that living with SCD for 23 years has had on her body and mind. She has residual damage to her joints and unfortunately still suffers from occasional pain crises.
“What most people don’t realize when you get a transplant after so many years of having a disease is that your mind goes through an identity crisis. Now you have to rewire it,” she says.
Despite it all, she has taken this experience with chronic illness in stride, serving as a sickle cell disease advocate, and sharing her bone marrow transplant experience on her instagram page. After successfully graduating college, Alfa is currently preparing to apply to medical school and hopes to become a hematologist.
September is Sickle Cell Disease Awareness Month. Alfa urges others to show those with SCD some grace, as you never truly know what they’re going through.
“Be understanding because they can’t control when sickle cell shows up. They cannot,” says Alfa. “If you want to help, just be a shoulder or a backbone. They are going to need that when they are in pain.”
September is Sickle Cell Awareness Month. Learn more at SickleCellAwareness.org.