‘As a kid, I used to hide my bleeds’ - Community support is crucial for patients with complex illnesses

My parents discovered I suffered from hemophilia when I was a baby. My gums began to bleed when my teeth started to come in and the bleeding was difficult to stop.

In dealing with my hemophilia, I found that it was important to have a community of people, including health care professionals, around me. Managing hemophilia meant more than taking my medications regularly to control my bleeding. My social workers, nurses, physicians, insurance, specialty pharmacy and community resources all had to come together to make sure I was supported and cared for.

Hemophilia is a bleeding disorder in which a person’s blood doesn’t clot sufficiently. It can lead to spontaneous bleeding in one’s joints that can cause chronic pain, and it can also cause bleeding in vital organs such as the brain, leading to potentially serious issues including seizures or death if left untreated. The disease is most commonly diagnosed in males. In the United States, as many as 33,000 males are living with hemophilia, according to the Centers for Disease Control.

Hiding my bleeds

As a kid, I used to hide my bleeds. I hoped to spare my mother from the helplessness of watching me suffer. I was embarrassed to ask anyone for help and I felt my bleeds would cause stress for everyone around me. I kept them a secret until they were noticeable and I couldn’t conceal the swelling in my joints.

But in high school, I realized I didn’t have to manage this disease alone. It was then that a hemophilia treatment center nurse connected me to Carnell “Chappy” Chappelle, a case manager and community advocate for hemophilia patients at BioPlus Specialty Pharmacy.

Connecting the dots in health care

Chappy, as he’s known by his friends (everyone), has never met a stranger. He’s a Vietnam veteran and pilot who’s been in health care since 1992.

Chappy’s a man of many idioms, with a deep love for people. He always says he’s “making the world round for families when at times it seems square.” Simply put, he’s a problem solver.

As a case manager who works with patients with bleeding disorders, Chappy helped me understand the importance of regularly taking my medications. That’s no small task. Since I was 5 years old, I’ve given myself IV blood clotting medications at least weekly. But he also knew I’d need resources in the future to manage my hemophilia and support my life goals. In fact, all patients at BioPlus Specialty Pharmacy have access to case managers like Chappy to make sure they are connected to care and community resources.

After I graduated high school, Chappy connected me to our state’s vocational rehabilitation department, which works to remove barriers to employment for those with disabilities. Together, with vocational services, we secured tuition and textbook funds for me to attend community college, and eventually, the University of New Mexico, where I’d graduate with my Bachelor of Arts degree in music in 2015. Chappy also walked me through the Social Security process so I could acquire supplemental income while pursuing my degree.

As I became an adult and medication management became my responsibility, Chappy also kept me connected to my pharmacy and physicians. He still calls often to remind me to refill and take my medications, and to schedule my wellness visits with my doctor. He’s a lifelong friend and mentor.

Community support is crucial for patients, including those like me managing a complex illness. We need community advocates like Chappy who recognize medical diagnoses can affect every aspect of our lives.

Miguel Sanford is a patient of BioPlus Specialty Pharmacy, a Carelon company that operates under CarelonRx.