Finding an online connection for patients with rare blood cancer, Myelofibrosis
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Jun 06, 2013 | 23983 views | 0 0 comments | 448 448 recommendations | email to a friend | print
(BPT) - When faced with a serious diagnosis such as cancer, many people immediately begin searching for information about their condition. Some go to the library to find published resources about studies, treatments and possible cures; some ask their doctors for additional resources; and many use the Internet to find information that may help answer their questions.

But with less common cancers such as myelofibrosis – a life-threatening blood cancer only affecting 16,000 to 18,500 people in the United States – it’s not always easy to find the answers. And it may be even more difficult for those affected to connect with the support and resources they need.

Myelofibrosis is one of several potentially life-threatening diseases called myeloproliferative neoplasms, or MPNs. National nonprofit cancer support organization CancerCare, along with a number of other nonprofit organizations, is a member of the MPN Coalition, which has created Myelofibrosisawareness.org. This free online resource provides extensive information about the disease, available treatments, a Symptom Tracking Calendar, clinical studies and counseling and support group information.

MPN Awareness Day is Sept. 12. Spreading awareness of rare diseases like myelofibrosis helps to create new resources for people affected, as well as promote the need for funding to help further the progress of research for the disease.

A person diagnosed with myelofibrosis is either over- or under-producing blood cells in the bone marrow. People are traditionally diagnosed between the ages of 50 to 80. Symptoms, which can significantly impact daily living, may include abdominal pain, fatigue, fever, night sweats, bone or muscle pain, easy bruising or bleeding, pain under the left ribs, an early feeling of fullness, itchiness, weight loss and shortness of breath.

Because patients differ greatly in the symptoms they experience, a doctor will determine the best treatment plan. Treatments remain limited for this disease and include one Food and Drug Administration-approved drug, as well as options such as blood transfusions, radiation therapy and other medications.

To learn more, visit myelofibrosisawareness.org.

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