John Baez is a 29-year-old patient living with sickle cell disease (SCD). He started experiencing pain crises — an often-unbearable symptom of SCD — at just two months old and they have not stopped since. His crises happen every two to three months, and usually manifest in his lower back and chest. Lately, it’s been his right hip.
“I’m in pain mostly every day. It’s just a matter of how much,” says John. “Pain medication, fluids and oxygen help, but there isn’t a ton that actually makes the pain go away. It can go on for anywhere from a couple of hours to a month. The longest I’ve been in the hospital is 32 days. You just learn to deal with it.”
The Uphill Battle
John’s journey has been a challenging one. He has often faced prejudice when requesting help, most recently while visiting an out-of-state Emergency Department for urgent pain medication. The staff treated him as if he was dishonestly seeking narcotics. “Why would I want to be in an emergency room on my vacation?” he asks. “That doesn’t make sense. I needed help. That’s why I was there.”
He has lost two or three jobs for being hospitalized for long periods of time, which is quite common for sickle cell patients, explains Sharl Azar, MD, medical director of the Comprehensive Sickle Cell Disease Treatment Center at Massachusetts General Hospital. “Struggling to hold down a job is a reality for SCD patients,” he says. “They are in and out of the hospital and the infusion center. They’re always having to take time off from work because they’re in pain or recovering from pain.”
A Safe Haven
The Comprehensive Sickle Cell Disease Treatment Center is where John is now a patient, and he considers it a safe haven for his treatment. “I came to Mass General at 25 years old because a doctor from my days as a pediatric patient mentioned they had recently opened an adult sickle cell care program,” says John. “For those years in between, I was visiting emergency rooms and being seen by doctors who didn’t really know how to handle my case or treat me. When I arrived at Mass General, I felt how I did when I was a child. I had a relationship with my providers again and felt safe and cared for.”
“I share my experience and talk to [health care professionals] about how they can approach sickle cell disease patients like me. It’s important to give them firsthand insight. They need to know we’re just trying to live as normal a life as possible so sometimes if we come across frustrated or angry, it’s nothing personal — we’re just going through the emotions of this lifelong disease.”
After a long hospital stint nearly a year ago due to multi-organ failure, John’s symptoms have become more manageable thanks to Dr. Azar’s team, and he’s now visiting Mass General only a couple times each month for infusions. He currently works at an IT company where his colleagues are understanding and flexible — even going as far as to partner with John to raise awareness around SCD.
“John is fortunate because he has supportive and wonderful work and home environments. They are true advocates for him,” says Dr. Azar. “So, when you have that, coupled with tailored, comprehensive treatment, you start to see success stories.”
A New Outlook on Life
John is realistic about his future with sickle cell disease and recognizes that more battles inevitably lie ahead. However, with the help of Mass General’s devoted team, he is facing them with hope and determination. He has started an Instagram account to share his day-to-day life as someone living with SCD, including behind-the-scenes clips of a typical hospital visit. For the last few years, he has joined his providers in speaking engagements to physician residents and other health care professionals about the importance of empathy.
“I share my experience and talk to them about how they can approach sickle cell disease patients like me,” says John. “It’s important to give them firsthand insight. They need to know we’re just trying to live as normal a life as possible so sometimes if we come across frustrated or angry, it’s nothing personal — we’re just going through the emotions of this lifelong disease.”
Encouraging empathy continues to be a common theme among John and providers like Dr. Azar. They hope their promotion of the topic will activate new interest in the scientific community to drive better treatment options. Until then, both will carry on — fighting the good fight — as they work toward a more just, inclusive health care system.
To learn more about the Comprehensive Sickle Cell Disease Treatment Center, please contact us.
