On September 20, 2012, we celebrated the first annual Myelofibrosis Awareness Day. Myelofibrosis (MF) is one of those rare cancers we don’t hear about often—because these patients and their caregivers represent a relatively small group, there are no walks, runs, or rides aimed specifically at supporting them. Although it can be life-threatening, MF is not a cancer with a recognizable name and you may not know — or realize you know — anyone who is affected by it.
And yet, MF is a cancer that brings with it the myriad of fears, doubts, pain and hope inherent to any cancer diagnosis. It is a chronic and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Approximately 18,000 people in the U.S. suffer from MF, and those affected—patients, caregivers and practitioners—require support and resources.
September 20, 2012 marked the first designated Myelofibrosis Awareness Day, the commencement of a platform of ongoing awareness activities and efforts hosted by the MPN Coalition, a group of organizations helping people with myelofibrosis. The theme of the day, Elements of Empowerment, encouraged those affected by MF to become knowledgeable about the disease; be partners in their health care; and find strength in association with other patients. CancerCare has proudly joined the MPN Coalition in raising awareness of a series of online and in-person events and tools designed to help those affected by MF access information and resources to better manage this disease.
These efforts include a new website from the MPN Coalition – www.myelofibrosisawareness.org- an online hub that provides tools for patients and healthcare professionals to understand MF symptoms, resources and treatment options. Available on this site is a list of MF awareness events being hosted by members of the coalition throughout the year. TheEMPOWER Toolkit—Empowering Myelofibrosis Patients With Education & Resources—has also been developed to provide simple steps and resources for local organizations to host MF awareness events. For those affected by MF, the site also includes a Symptoms Management Calendar, a resource available in print and electronic forms, which provides a systematic way for patients to track their symptoms and tips for communicating with their healthcare team.
Join us in recognizing the many people affected by MF and all cancers, whether it is the researchers working for funding and advancing the science; the healthcare providers taking the time to understand the complex and varied treatment options; or the patients and caregivers who struggle to live each day to the fullest despite their diagnosis.
For more information, Empower yourself with knowledge by visiting www.myelofibrosisawareness.org.