When Malajisa was five, her mother, Leslie, noticed that she ran differently. “She was a happy kid and nothing about her looked different,” Leslie recalls, but as she continued to go through growth spurts, that funny run became part of her walk as well. Leslie brought the issue up with Malajisa’s doctor at a regular check-up. “By seven, her leg was hurting her, and I just knew something wasn’t right,” Leslie said.
After many tests, images, and a few incorrect diagnoses, Malajisa was told she had fibrous dysplasia (FD). “They basically told me that there was nothing they could do for her, and that she would likely go through puberty early,” Leslie recalled. Left without much information or direction, Leslie did what most rare parents have found themselves doing: she became the expert on her child’s care.
All FD/MAS patients, and indeed all rare patients, are familiar with the challenges that create barriers to the diagnosis and treatment of a rare disease: the scarcity of experienced doctors and lack of both information and treatment options can feel insurmountable. However, Leslie and Malajisa face additional challenges accessing quality care simply because they are Black.
As an organization, FDF condemns inequality in all its forms. We often focus on how FD/MAS does not discriminate. It is an entirely random genetic mutation that can affect anyone from any country, any walk of life, any religion, gender identity, or skin color. While this is all scientifically true, it does not capture the lived experiences of the people diagnosed with this disease.
FD/MAS may be a great equalizer, but the healthcare system FD/MAS patients must rely on is not.
Studies repeatedly show that Black people are more likely to face barriers to quality medical care. Systemic racism has created a snowball effect of oppression that leads to generational poverty and a lack of resources. In addition to the barriers of poverty, many Black Americans have a distrust of healthcare industries because of historical injustices such as the Tuskegee Syphilis trial. For all these reasons, Black Americans are more likely to forgo necessary medical care, be without health insurance, and are less likely to become involved in research and clinical trials. Those factors are only exacerbated for Black Americans with a rare disease, who are more likely to suffer for several years undiagnosed. A careful look at just one story, Malajisa’s, reveals many of these disparities in action.
Although Leslie and Malajisa were told the diagnosis could affect her hormones, she was never given information about McCune-Albright Syndrome or FD/MAS endocrine care. “When I asked about different services or approaches to Malajisa’s problems, like her legs being different lengths,” I was always told, “no, that wouldn’t work,” Leslie recalls.
Frequently, the systemic inequality that Black patients face comes in the form of an absence of options for care.
Teneasha Washington, Ph.D., MPH, who previously served as FDF’s Research Programs Manager, helps illuminate some of these absences in Malajisa’s story. “Racial disparities in healthcare come across not just in access to care, but also as discrepancy in quality of care.” explains Washington, “If a care provider doesn’t have information or can’t provide a service, they should give you information on how to access that care and refer you to someone who can help.”
When Malajisa was ten, she broke her femur. “I was just walking down the stairs, on my way to dance class, and I tripped,” she recalls. That break led to several surgeries for Malajisa. “The first surgeon didn’t really know what he was doing,” said Leslie, “He used all sorts of screws and fixtures that didn’t hold and led to more complications down the road.”
Despite these challenges, Malajisa continued to live up to the FD/MAS terminology of being a warrior. Even after four major surgeries on her hip and femurs, she remains a spot of sunlight and optimism for those around her. She insisted on going back to school two days after surgery.
“I didn’t want her diagnosis to hinder her in any way,” says Leslie, “and she didn’t want to be seen as different. She didn’t want to fall behind in school with her grades.” Malajisa recalls her peers being very supportive and helpful, offering to push her wheelchair around the building and help her any way they could, but it was a challenge to regain full range of motion. “Malajisa didn’t see a physical therapist for almost three years after her surgeries,” recalls Leslie, “Even though I know I asked about it before that.”
Listening to Malajisa’s story, Washington points out that the absence of physical therapy services is a glaring and unfair hole in Malajisa’s medical history. After any surgery, bones, muscles, and soft tissues undergo a critical period of healing. If patients do not use the joint or are left to accommodate for pain and pressure on their own, their body may heal improperly, and this could lead to issues with range of motion, function, and flexibility down the road. For this reason, patients often start physical therapy within days of having a major surgery, not years later.
Another common barrier that Black people face in the American healthcare system is the prevalence of false stereotypes about their physical needs and abilities. “A prevalent misconception in healthcare is that Black people do not feel pain or that we have thicker skin than other races,” explains Washington. Malajisa’s story offers confirmation of this harmful stereotype. “I think I had some pain medication for right after my surgery,” she recalls, “but no one has ever really talked to me about it since, and I’ve never had any sort of treatment for pain.” Pain is a common complaint among FD/MAS patients.
Today Malajisa still has several screws and a support rod in her leg, but she does not see anyone for care and hasn’t for years. “I don’t have health insurance right now,” Malajisa explained, “It just seemed like hospitals take your money and don’t really help you.” Washington’s work and research with marginalized communities confirms the prevalence of Malajisa’s concerns and attempts to address them. “People should know there are resources and services available that they can access.” says Washington, “Most hospitals and medical centers will have support programs and financial aid that allows patients without health care coverage to access care for free or at a steep discount.”
Every patient and caregiver has the right to access these financial programs, but it’s the responsibility of the healthcare facility to make sure patients are aware of those opportunities. Neither Leslie or Malajisa ever remember anyone offering any financial assistance for their costly and complicated bills.
Malajisa cannot take a day off from the racial disparities she faces, just like she cannot take a day off from FD/MAS. Both are a part of her everyday life, and she is not one to let a challenge slow her down. “If people ask about my walk, I tell them about my diagnosis, but I don’t allow it to keep me from doing anything,” Malajisa says. She can recall times where she was in pain and having a hard day, but didn’t want to be the one to hold others back. “Like when I went to Disney world with a whole group of people.” says Malajisa, “We were running all over the place trying to get on rides, and it was hard, but I didn’t want to be the reason we had to slow down.”
Malajisa continues to take on life, despite the added stress and pressure that 2020 has brought, with grace and optimism. She was recently honored as the Phoenix area Youth of the Year by the Boys and Girls Club where she works. “She’s quiet, but she’s a leader,” explained her mother, “She is always looking for ways to make things better for other people, to brighten their day.” The truth of Leslie’s praise for her soft-spoken and warm daughter comes through even in a short phone call.
This Fall, Malajisa plans to enroll at Arizona State University (ASU). “I want to study international business and chemistry,” she says, “Because I want to start my own cosmetic business and the chemistry would help me develop my own skin care products.” ASU is lucky to have her as part of the class of 2024.
Malajisa’s determination and attitude are admirable, but they are not necessary for our community to take note of her experience.
Even with her great attitude, she still faces racial disparities that compound the challenges of living life with a rare disease. Malajisa’s is just one story, but we know that there are many shades and variations of her experiences out there.
As an organization, we hope to empower all patients to navigate the highest quality care, with access to every service available to support them. We hope Black people and other marginalized groups living with FD/MAS will read Malajisa’s story and find new avenues for advocating for themselves, including accessing supportive medical care, asking for access to necessary treatment and resources, and participating in research for a treatment.