Phoenix, Arizona (NAPSI) - Every year, about 14,500 people are diagnosed with myeloproliferative neoplasms (MPNs), a group of rare blood cancers that originate in the bone marrow and the more you know about them, the better you can be at finding support for yourself or someone else affected by this diagnosis.
The Problem
Living with a rare cancer, like an MPN, often comes with its own unique set of challenges. Getting an accurate diagnosis can be difficult. Unlike many cancers, most people have never heard of MPNs, which can make those diagnosed feel isolated. People with MPNs don’t always look like they are sick, and very often the treatment is “watch and wait” or symptom management only. MPNs include polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis (PMF).
Who Can Help
To remedy the situation, the Cancer Support Community (CSC) created “Shining the Light on MPNs.” Supported through an unrestricted educational grant from Incyte Corporation, it aims to educate people on the challenges of living with an MPN and provide communities and individuals with resources for support. CSC affiliates are hosting educational workshops and activities all during the month of September to talk about what exactly MPNs are, what it’s like to live with one, current treatments and new treatments on the horizon, and where to go for support.
Planned activities include informative sessions on diagnosis and treatment, living well with an MPN, nutrition workshops and a chance to network with others impacted by MPNs. Information about other organizations offering support and information for those with an MPN and their loved ones will also be available.
CSC is an international cancer nonprofit helping to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.
Backed by evidence that the best cancer care includes social and emotional support, the organization delivers a comprehensive menu of personalized and essential services including support groups, educational workshops, exercise, art and nutrition classes, and social activities for the entire family, free to men, women and children with any type or stage of cancer and to their loved ones.
“Life with a rare cancer comes with unique challenges and it is important for the general public to recognize these,” said Kim Thiboldeaux, president and CEO of CSC. “CSC is dedicated to providing social and emotional support to people diagnosed with all kinds of cancers, no matter how rare.”
What You Can Do
Anyone interested in MPN awareness can share his or her experiences using the social media hashtag #MPNAware2014. In addition, anyone diagnosed with cancer should consider these tips:
• Take one day at a time.
• Build a support network of positive, consistent people.
• Communicate your cancer-related concerns to your health care team so that they can help you find support.
• Try to stay calm and connected. Mindful meditation, yoga, exercise and journaling can help reduce stress.
• Take good care of yourself. Try to eat well, get plenty of sleep, exercise.
How To Learn More
For more information, visit www.CancerSupportCommunity.org/MPNAware2014 or call (888) 793-9355.
