Deborah Cook, an elementary school teacher in her mid-30s, was vacationing in Yosemite National Park with her husband when she noticed she was having difficulty catching her breath at odd times. Chalking it up to simple exhaustion, she slowed down a bit and enjoyed the rest of her vacation. However, on the flight home, her lower legs swelled, which she had never experienced before. When the swelling did not resolve after a few days, Ms. Cook sought medical help. After a series of blood tests and a bone marrow biopsy, she was diagnosed with severe aplastic anemia.

Deborah Cook and family
Photo and text used with permission of Deborah Cook

Aplastic anemia is an acquired bone marrow failure disease in which the body stops producing enough new blood cells. Patients with aplastic anemia are at a higher risk of infections and uncontrolled bleeding. At the time of her diagnosis in 2003, much was unknown about aplastic anemia; internet searches yielded much – incorrect – information that only served to terrify Ms. Cook and her family in thinking about the future. Genuine support came from the Aplastic Anemia and Myelodysplastic Syndromes International Foundation (AA&MDSIF), an organization staffed with dedicated professionals who are committed to the mission of helping patients with bone marrow failure diseases and their families. This group enabled the Cooks to better understand the disease, determine the best course of action for treatment, and identify qualified doctors.

At the time, the only long-term treatment for aplastic anemia was bone marrow transplantation, but Ms. Cook was not able to make a match within her family. However, through her hematologist, Ms. Cook identified a National Institutes of Health clinical trial that was investigating a new treatment for aplastic anemia. Luckily, Ms. Cook qualified for the trial, which began with a 2-week hospital stay in a special unit for patients with compromised immune systems. Throughout her treatment, blood transfusions were necessary to support her body while her bone marrow recovered. Six months after her treatment began, Ms. Cook was blood transfusion-independent and considered once again “healthy.”

Fourteen years later, Ms. Cook remains healthy and stable and is incredibly grateful for her family, friends, and the health professionals who supported her during her journey through treatment. Among other activities, she enjoys hiking and travelling with her husband, son, and their dog. With her teaching career on hold during her treatment, Ms. Cook began practicing gentle and restorative yoga to support her immune system. The beneficial effects of yoga influenced her decision to become a registered yoga teacher, bringing her back to her profession, this time as a yoga instructor.

Ms. Cook has stayed active within the bone marrow failure community and is a member of the Board of Directors of AA&MDSIF. She knows firsthand the positive difference the foundation makes in the lives of bone marrow failure patients and the many benefits it provides. These include outreach through patient conferences, educational materials on its website, and professional conferences for doctors and nurses. Ms. Cook is also on the Programmatic Panel for the Bone Marrow Failure Research Program (BMFRP) as a consumer reviewer. The BMFRP’s goal of funding research that promotes new treatments and cures for bone marrow failure diseases is incredibly important to Ms. Cook. The clinicians, researchers, and consumer reviewers who participate in the BMFRP are profoundly dedicated to the research being done and the patients it will ultimately help. Bone marrow failure diseases are rare and, as such, suffer from a lack of pharmacological industry interest due to the small patient population. This lack of industry interest makes the BMFRP all the more important. The program offers a consistent mechanism for funding new and experienced investigators who wish to further their work in the area of bone marrow failure research. Ms. Cook looks forward to the day when this research reveals a successful treatment – or cure – for all bone marrow failure diseases.