Empowering Transplant Patients and Survivors

February 02

“As a transplant survivor and founder of a nonprofit, Susan is in a unique position to be the voice of the patient, offering insight into the patient perspective, and providing the appropriate messaging and education." —Penina Seidman, Former Director, Donor Management, DKMS

In 1989, Susan Stewart got a bone marrow transplant that helped her beat leukemia. Becoming a transplant survivor was a triumph – but Susan felt overwhelmed and unprepared for the challenges she faced.

“I had never heard of bone marrow transplants, I had no idea what to expect, and the complex medical explanations left me so lost that I couldn't figure out the right questions to ask!”

After talking to other survivors, Susan discovered that her experience was not unique. In 1990, she started BMT InfoNet, a nonprofit organization that empowers transplant patients, survivors and caregivers with accurate, easy-to-understand information about all stages of the transplant process.

“People come to us looking for guidance and support,” she explained. “They want to know about treatment side-effects, and how to manage the physical and emotional issues they may face. We help lighten their load. It’s very satisfying – something you go home feeling good about.”

Raising awareness and reaching more patients, survivors and caregivers is an ongoing challenge. “We try our best to make sure people know about our service, and that healthcare providers are aware of how we can help,” she said.

To date, the organization has helped more than 100,000 people. Services include comprehensive, medically accurate online and offline publications, a Caring Connections peer support program, webcasts, a directory of transplant centers, as well as events, including the first-ever national transplant survivorship symposium.

Our goal is to make the transplant experience –before, during and after- easier to cope with.

Help more patients become survivors: Join the registry

Learn more about BMT InfoNet: www.bmtinfonet.org