An Inspiration in the MPN Community

An Inspiration in the MPN Community

                                

“I thought I had fleas” the itching was that bad. I threw out mattresses; and after many appointments with a dermatologist, nothing was found. My daughter told me, ‘Mommy nobody else has fleas in our home.’” At the time Jean was unknowingly suffering from pruritus, a common symptom of Polycythemia Vera. She also had debilitating headaches, bone pain and fatigue. “I was advised by a PCP that I might need psychiatric medications.” That was in 2009, and since then Jean has not let her PV diagnosis crush her spirit; in fact she’s made it her mission to help other diagnosed patients in her region by forming an MPN support group, where members drive over an hour for the chance to talk and support one another through this rare diagnosis.

 

Jean adds, “So much has changed since I’ve been diagnosed.  You look at life differently and don’t take some things so seriously; (with this diagnosis) I’d rather be spending time with my kids.” Jean is grateful for the support of her husband and a good friend Lisa who always has her back. She adds, “Helping other patients always gives me a boost. And my support group has been so rewarding.”

 

Her advice to newly diagnosed patients, “It’s so important a person reach out to an expert in this disease. This gives our local doctors who are hit with so many cancers to treat a baseline to work with.”

And patients who are struggling or feeling overwhelmed, she offers this, “Talk with someone who has lived with the disease for a long time. Find out what’s working for them. To have somebody who understands what you’re going through really helps.”  She also adds, “Try to help someone else. It takes your mind off yourself and you’re doing something constructive and have a purpose.”  And that’s exactly what Jean does. She is a volunteer Imerman-Angel and speaks with patients and caregivers across the country. Jean also attends MPN forums and conferences all over the nation educating herself and shares her knowledge with those who need it.

 

Jean adds, “Because of this diagnosis I have had the opportunity to speak with so many incredible people. Whether it’s at a conference and it’s a research doctor, or speaking to newly diagnosed individuals, they have all been so appreciative for all I have done.” And that’s what keeps Jean going, her passion for helping others diagnosed with this rare disease. Jean is quite simply an inspiration to many in the MPN community.

 

 

Contributed by Jennifer Acker

Author: Nunez, Raquel

Raquel Nunez joined the MPNRF in 2012 with a kaleidoscope of experience ranging from brand management to community organizing. As the Program Manager overseeing community outreach her main objective is to put MPNRF findings in as many MPN patients hands as possible.

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