My Journey From Sickle Cell Disease to Healing

John Masembe is the program coordinator for Seattle Children’s Sickle Cell Disease Program at Odessa Brown Children’s Clinic (OBCC). In his own words, he shares how having sickle cell shaped his life; the toll it took on him and his family; the supportive community he discovered; and how his experiences brought him back to Seattle Children’s.

I was born with sickle cell disease, as were two of my siblings. Fortunately, my three older sisters don’t have it.

Growing up with sickle cell was quite traumatizing, and having full life experiences was hard. One moment I was OK, another I was sick, another I was going through a pain episode, another I was admitted to the hospital needing transfusions because my red blood cells were low.

In 2005, my older brother died from sickle cell disease. That’s when my mom moved with me and two of my sisters from Kampala, Uganda to Seattle to find a pathway to quality care. I was 13 at the time.

When we arrived in the U.S., the culture shock was hard. We had to navigate a whole new medical system and adapt to the culture, language, racial biases and systemic issues we were informed about but not prepared for until we moved here. The cold weather was also a problem because it induces a lot of pain in people with sickle cell.

Seattle was a good place to be, though, because we found the Sickle Cell Disease Program at OBCC.

Finding community

Being at OBCC gave us a sense of comfort. They had doctors, hematologists, an advanced practice provider, a nurse and a scheduling coordinator all trying to help improve our quality of life. Dr. Michael Bender was the head doctor for sickle cell disease at the time.

My sister Joanita and I were quite sick. There were times we’d be hospitalized at Children’s at the same time. We wanted to go to school, be social and fit in, but we couldn’t because of our illness. We needed a sense of community. That’s when Dr. Bender and others told us about Camp Korey for kids with sickle cell disease.

We went to camp in summer 2006, and that’s where we first met people from the Metropolitan Seattle Sickle Cell Task Force. It gave us that sense of community, culture and experience we were looking for. I didn’t feel as lonely, and we could get different kinds of support.

Through the task force, I met people in their 50s and 60s with sickle cell who had survived. Before that, the oldest people I’d seen with sickle cell were in their 30s or 40s. I met Ken West, supervisor of desktop support in Children’s IT Department and president of the task force. He was an inspiration because he was in a leadership role and also had sickle cell.

The heavy weight of sickle cell disease

Despite the care I was receiving, my health was deteriorating. My lungs were collapsing. I also had acute chest syndrome, which forced me to get blood transfusions every two weeks. Managing the pain was tough. Pain medications made me sleepy and had risks of abuse and addiction.

I had to be on oxygen all the time. Imagine trying to have a social life with oxygen tubes in your mouth and nose; it’s difficult.

I didn’t have any sense of health literacy or understand that my race played a role in my health and my patient experience. I also didn’t know there were curative therapies available.

It was hard to build relationships or have ambitions because I didn’t feel like I was going to live long. Isolation and depression take a toll. The disease is so heavy; it can suck out everything inside of you. If you’re not strong, you can easily crawl up in a corner and say, “That’s it. I’m not going to do anything.”

Taking a risk

I learned that some places on the East Coast were using bone marrow transplants to cure sickle cell disease, so I asked my care team about that. They said if I had a sibling who was a 100% match and didn’t have sickle cell, it could be done. They tested my older sisters, and one of them, Lydia, was a 100% match. In 2012, I transitioned to adult care at Fred Hutchinson Cancer Center and that got the ball rolling.

There were risks, and we were scared, but there was no other option for me. The Fred Hutch team educated us about the risks as well as the benefits and left the decision up to us. That showed me the importance of shared decision-making. I liked that — it made me feel comfortable. I chose to proceed.

I came back to Seattle Children’s for the transplant. They gave me a course of chemotherapy and preparation drugs for three months, then infused me with Lydia’s cells.

As scary as the process was, my team was there with me and so was my community — the people I had met during camp and through the task force.

The transplant worked — I was cured!

I’m not going to lie: The first six months were hard. My body was adapting to the new cells, and my immune system was weak. But slowly I got better.

Coming full circle

I was celebrating being cured, but later that year I lost my baby sister Joanita to sickle cell disease. That hit me hard. Imagine going from peak excitement to experiencing this loss. I had grief, trauma and survivor’s remorse. I felt bad for my mother because now she had lost a second child to sickle cell.

From that moment, I told myself, “I have to work in healthcare. I want to make an impact.” It wasn’t just Joanita’s death; it was also the experiences I had at OBCC, the quality of care I received and being cured of the disease.

It took two years for my body to recover from the transplant. In 2018 I went to the University of Washington to earn my bachelor’s degree in public health. I worked at Fred Hutch doing clinical patient navigation and volunteered with the Metropolitan Seattle Sickle Cell Task Force. I wanted to help improve the delivery of healthcare while also building relationships between patients and providers to increase trust in the healthcare system.

Last year I volunteered at the task force’s annual Sickle Cell Walk. Dr. Shaquita Bell was there and said Seattle Children’s Sickle Cell Disease Program could use somebody like me.

And here we are! Today I am the program coordinator for the sickle cell team. My role is unique and exciting. I’m partly in the community, partly assisting patients directly, and partly doing outreach within the community. I help bring the patient and community perspective to the sickle cell team as well as identify barriers to treatment. It helps patients, providers and caregivers better understand how to navigate sickle cell treatment and deliver a higher quality of care. Plus, I love being back at OBCC.

Recently, the team asked if I would speak with a patient who wasn’t taking his medication. I visited him in the hospital, shared my story and tried to connect with him. He was lost emotionally, wondering what the point was of taking all this medication. I could relate, but I told him, “If you have dreams and ambitions, you have to take your medication. Let your dreams find your body in the position to make them reality when the opportunity is there.”

The power of hope

Sickle cell has robbed us of so many people, but today there’s more hope than ever. When I had my transplant, you needed a sibling donor who was a 100% match. Now you only need a half match, meaning parents are now potential donors, and so are half-siblings.

We also now have gene therapy, so even if you don’t have a donor, there may be treatments that can cure you by altering your sickle cell gene. It’s expensive, but it is a new option for some.

It’s important that we tell patients about treatments like these, including both the risks and benefits. You’ll be surprised how many patients will take their medications and show up to their appointments more regularly to make themselves a better candidate for a curative therapy. They’ll do it because they see there’s hope.

Resources

• Seattle Children’s Sickle Cell Disease Video Series
• Seattle Children’s Sickle Cell Program Makes Significant Progress Toward Becoming a Center of Excellence
• Seattle Children’s Odessa Brown Children’s Clinic