PV Reporter will spotlight organizations and online MPN support groups from time to time that have a unique message to share and help MPN patients as well. I have known Jeremy since I first got involved in the Facebook Support Groups 9 years ago. He had a positive influence on me personally and I have seen many patients embrace his philosophy. Although some of us are unable to do too much exercise, the idea of movement and remaining active is so crucial to us all.
by Jeremy Smith
In 1990, one year after my diagnosis of Polycythemia Vera, I joined the very first MPD support group on America Online. Six brave souls who in each other found the strength they needed to get through their MPD life. Flash forward a decade or so later, and I was fortunate enough to have found Zhenya Senyak in another support group. Over time we got to know each other, and he kindly extended me an invitation to join him in the formation of MPN Forum. Over the years we accomplished quite a lot, not as much as we had hoped. There was one question that I have not been able to answer over the years and I have been looking for a solution for a long time. After an MPN Patient has received enough support at one of the MPN Support Groups, what’s next? How we do we move support beyond the same traditional topics: support for recently diagnosed MPN patients, SCT’s, education, finding a good Hematologists and pharmaceutical options?
Based on my own personal experience with MPN Support Groups I stopped looking for the answers from the MPN Community, they had a method and little to no interest in a new model. I found my answers as I looked at how support is implemented for Cancer patients. I spoke with oncologists and read as many articles on Cancer support and treatment as I could get my hands on.
The New Normal Debate
What I quickly learned is that Cancer Community had moved way beyond the “new normal” debate. They were talking about exercise, diet, nutrition and mindfulness, with a greater focus on healing and spirituality. While both the MPN and Cancer patient share the burden of having to cope with an overwhelming amount of mental stress and fatigue. The cancer patient has been provided with a great deal more tools for moving forward. I was inspired by discovering this and initially tried to bring some of these tools back to the MPN Community but it was not met with the enthusiasm I had hoped.
Many Cancer patients are better educated about alternative solutions and many have become long-term practitioners of mindfulness and have implemented meditative practices. MPN Support sites in general lightly touch on these topics and are limited in scope.
The other challenge is with the culture of the MPN groups themselves. Many are not interested in hearing about exercise programs and the benefits of nutritional change. Even at MPN Forum, a much more progressive MPN Support site, I was told to stop talking about exercise and diet by members there. That did not stop me, but the message was clear to me, stop fighting an immovable object, it’s time for me to venture out on my own, and last year I started MPNLIFE on Facebook.
MPN Patients can strive to return to living a normal life after diagnosis, Yes, I said normal life. I believe the key to long term survival and improving quality of life after diagnosis, is to embrace life, and get back to focusing on living again. Begin the process of shifting the focus to living instead of dying. This is about quality of life and healing your body and making sure the body has every opportunity to heal itself. By harnessing our greatest weapon in the fight to survive, our own bodies we have a chance to outlast the progression of the disease.
We have established three core concepts for MPNLIFE:
Movement is exercise related and focuses on the need for MPN patients to remain active.
Philosophy covers spirituality, yoga, hypnotherapy, meditation and mindfulness. It’s also a life mantra that every MPN Patient needs to develop. Companies have business plans and mission statements, why don’t we?
Nutrition is a deeper dive on how to eat better, while also rebuilding out immune systems and changing the bad habits we bring to our disease.
We are not limited to any of these core topics and we encourage MPN LIFE members to bring their issues out in to the open. Depression is a topic we often spend time on because it’s the least talked about MPN challenge, yet it’s one of the most devastating if not treated. We want MPN patients to be passionate and able to feel empowered enough to truly express how they are feeling. I love that we can finally talk about marijuana and I am surprised how many MPN Patients are consumers.
Which leads me in to the topic that bring fears in to the heart of every MPN Site administrator, politics. Now before anyone says I won’t join MPN LIFE due to this topic, please allow me to explain. We are not talking about debating Middle East Policy or the ballooning deficit. We are going to empower MPN Patients and help provide them a voice through legislative influence at the state and federal levels. This will take decades to develop but I have already started.
The very first issue I am working on with a Congressman on is to figure out why MF Patients are often denied access to INFN (Interferon) by insurance companies. I started using INFN in 2012, during that time five times I have been unable to receive my INFN due to Express Scripts and Anthem Blue Cross not being able to communicate properly. I want to cut through the red tape and end the fight patients often deal with when it comes to INFN approved.
There are a lot of long term plans for MPN LIFE include moving outside of Facebook, with a hybrid model loosely based on the LIVESTRONG model. Eventually adding a web site component to MPNLIFE as we grow and adding a revenue-based component via the web site with unique content designed specifically for MPN patients. I cannot accomplish all of this by myself, funds will be needed to bring on paid staff and fund our legislative agenda. We will also look to create a grant program specifically for MPN Patients without health insurance or unable to fund their day to day medical needs. That’s MPN LIFE in a nut shell.