Revealing the hidden impact of a rare blood cancer

(BPT) - Barbara didn’t realize that she had the power to inspire so many people across the rare disease community and beyond with her story. As the focal point of a newly released documentary film, “Beyond Blue,” Barbara’s experience shines a light on how people living with a rare disease may experience unseen symptoms, or, as Barbara puts it, “the 80-pound invisible blanket” that she carried.

Academy Award winning filmmaker in the Documentary Short Subject category, Cynthia Wade, director of “Beyond Blue,” has spent her career bringing previously untold stories to life through documentary films. This latest film, the first in a series of films being released this year, reveals some of the challenges people may face living with myeloproliferative neoplasms, or MPNs, a group of rare, chronic blood cancers, and the dramatic impact these blood cancers can have on patient lives, their family, friends and caregivers.

“The key to making a strong documentary film is to find a unique, emotionally arresting story that is supported by strong visual imagery,” said filmmaker Cynthia Wade. “I love finding unknown and little-known stories, like the hidden challenges people face living with a rare disease, and bringing these true stories to light.

“The series addresses stories of fear, persistence, loneliness and hope,” Wade continued. “‘Beyond Blue’ provides an intimate look into Barbara’s experience, her struggles and ultimately the lessons that she has learned through her battle.”

It is estimated that 200,000 people in the United States are affected by MPNs, which include three rare blood cancers — polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF). MPNs are the result of the abnormal development and functioning of bone marrow cells that produce the body’s blood cells. These progressive cancers can strike at any age, although they are more commonly diagnosed in adults over the age of 60. Barbara was only 32 when she was diagnosed with PV, more than 20 years ago.

“Before I was diagnosed, I was just living my life, but I just knew that something wasn’t right,” said Barbara, PV patient and MPN advocate. “When my doctor sent me to a cancer center for the first time to get evaluated further, my heart sank. I didn’t want this to be my story.”

Now 54 and an advocate helping others with MPNs, Barbara recalls that she had never even heard of PV when she was first diagnosed. PV, the most prevalent of these three MPNs, is marked by the overproduction of red blood cells, which causes the blood to thicken, resulting in an increased risk of blood clots that may lead to a heart attack or stroke.

“For patients with MPNs, it can be challenging to recognize the symptoms of their disease, as symptoms can vary over time and from patient to patient,” said Dr. Hugo Fernandez, chair and medical director of Moffitt Malignant Hematology & Cellular Therapy, Memorial Healthcare System, and Barbara’s treating physician. “It is important for patients and physicians to work closely together to track evolving symptoms, assess trends and changes in their disease, and talk through a treatment approach.”

In a small number of people, like Barbara, PV can transform into MF over time. For people with MF, the least common but most serious of these three MPNs, abnormal bone marrow cells cause the body to make too many or too few blood cells. This can lead to a buildup of scar tissue in the bone marrow, which interferes with the normal production of blood cells and leads to an enlarged spleen. MF symptoms include pain or discomfort in the abdomen under the left ribs, a feeling of being full without overeating, fatigue, itching and night sweats.

After Barbara’s PV transformed to MF, she received a stem cell transplantation. Stem cell transplantation is the only potential cure for MF, but it also carries a risk of life-threatening infections and other side effects. The documentary film captures moments from Barbara’s unique journey and the life lessons she has learned along the way. “I’m hoping this film will help others understand the many different aspects of living with a rare disease, tell them about what might be invisible to the eye and empower patients to have better conversations with their doctors and their loved ones in an effort to live their best lives and live out their own stories,” said Barbara.

To watch “Beyond Blue,” directed by Cynthia Wade and created in partnership with Incyte Corporation, or to learn more about MPNs, visit

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