Patients with rare blood cancers find strength in sharing information

People suffering from rare diseases can feel alone, disconnected from others dealing with their condition or unsure of where to find resources and support networks to cope with their experiences. For those suffering from a group of rare blood cancers known as myeloproliferative neoplasms (MPNs), this is often the reality as patients can experience a spectrum of different symptoms, which can change over time.

It is estimated that 300,000 people in the United States are affected by MPNs, which include three different blood cancers — Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF). All MPNs are a result of the abnormal development and functioning of bone marrow cells that produce the body’s blood cells. These progressive conditions can strike at any age, although they are more commonly diagnosed in adults over the age of 60.

As part of a growing effort to raise awareness for these rare and potentially life-threatening diseases, September has been designated as Blood Cancer Awareness Month. Throughout the month of September, MPN patients, physicians and caregivers are encouraged to use their voice and share their stories to raise awareness for these rare blood cancers. Individuals are encouraged to pledge their support by sharing an MPN Awareness badge with their friends and family on Facebook and Pinterest. Additionally, the updated “Raise Your Voice” toolkit provides the MPN community with new resources for sharing this message across social media channels and in their everyday lives. These and other resources are available on www.voicesofmpn.com.  

“Connecting with other families impacted by these rare cancers is empowering and reminds me that we are all in this fight together,” says Kathy Vogt, MPN patient advocate and wife of patient Gary Vogt. “As a community we need to support any efforts for greater education, understanding and awareness and MPN Awareness Day offers us a time to come together to learn and to connect with others impacted by MPNs.” 

Polycythemia Vera (PV), the most prevalent MPN, is marked by the overproduction of red blood cells, which causes the blood to thicken, resulting in headaches, dizziness and itching or more severe symptoms including chest pain, heart failure or stroke. Essential thrombocythemia (ET), close in prevalence to PV, is a rare condition in which a person’s body makes too many blood platelets. Myelofibrosis (MF), the least common, but most serious MPN, is a bone marrow disease, in which a person’s bone marrow causes 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 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 or fatigue, anemia, itching and night sweats. 

“The MPN patient experience and symptoms can really vary from one patient to another,” says Dr. Srdan Verstovsek, MD Anderson Cancer Center. “Because of this variance and the wide-range of symptoms, it is important for people with MPNs to speak with their health care providers on an ongoing basis to routinely assess changes in their condition over time.”

People looking for information on these rare blood cancers or to learn more about their MPN journey can visit www.voicesofmpn.com a website with patient resources provided by Incyte Corporation.


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