MPN Patient Stories

On Monday, September 16th, twelve courageous people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis took the stage in Bethesda, MD at the Externally-Led Patient-Focused Drug Development Meeting on Myeloproliferative Neoplasms. They discussed how health events and living with chronic cancer continues to disrupt their lives, their symptom burden, and what strategies they use for managing them as well as their experiences with various medications and clinical trials. But most importantly, each patient spoke about their hopes for the future as it pertains to drug development. YOU have a chance to weigh in as well. For the next 30 days, we will be collecting YOUR feedback on what issues you are living with, what benefits you would like to experience with further drug development. Just send an email with your name and diagnosis to communications@mpnrf.org (we will not share your name or email).  [...]

Note: Below is a first person account by an MPN patient of his experience with a clinical trial. This is not meant as an endorsement of the drug, company or institution involved. If you would like to share your story of being on a clinical trial please send an email to info@mpnresearchfoundation.org [...]

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When I was first diagnosed with Essential Thrombocythemia in my mid-thirties, I read through the many sources of conflicting information found online. It left me asking many questions such as:  Was this a big deal? Am I over-reacting? Am I under-reacting?  Do I tell anyone? Is this because I was raised beside a chemical plant? Because I previously smoked? Because I microwaved my food in plastic?  These types of unproductive thoughts flooded my mind and consumed entirely too much of my time. I turned to online forums filled with people who were equally confused, scared and frustrated and also, unfortunately, sharing misinformation.  This was gasoline on an existing depression fire that I already had burning. I knew I had to change my focus quickly or my biggest fears would materialize. I would be sickly because honestly, in life, we get what we focus on the most. [...]

Even though MPN patients who have a rare disease many may have never heard of "Rare Disease Day" and know next to nothing about the impact rare disorders have on society. Rare diseases play a larger role in public health than most people realize and deserve consideration from the medical community, policy makers, and the general public. [...]

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T December 19th, 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.  [...]

Over the last few months, one of our stars has been quietly completing a truly remarkable achievement. Rochelle Moore is about to complete her 4th century ride to raise money for MPN research. If you are not a cyclist, a century is a 100 mile bike ride that is completed in one day. It is a very grueling event. Doing four century rides in four months is a very difficult feat.
Rochelle started in June with a 103  mile ride called the Pumpkinvine Bike Ride. On July 11th Rochelle completed the RAIN Ride. That’s a 163 mile Ride Across Indiana. On September 13th, Rochelle will complete a ride called Bike Michiana, which takes place by the Michigan and Indiana state borders. She will finish her challenge with the Apple Cider Century on September 27th. [...]

Why did you become a Support Group Leader?
I became a Support Group Leader for a variety of reasons. The core reason is that I love to help people. When I was diagnosed, it was difficult finding information, whether it be medical professionals treating the disease with the latest treatments, learn what the latest research is or talking to someone that simply understood my experiences. When presented with the opportunity to start a Support Group, I had no other choice. It gave me a purpose. I retooled my skills that I developed from my work experience to focus on helping others. [...]

During the month of April, blogger Lina will be participating in WEGO Health’s #hawmc. The Health Activist Writer’s Month Challenge will have her writing every day during the month of April. Themes will be based on suggestions from WEGO Health. [...]

The strength of a community is determined by how well it is able to take care of itself. [...]

Watch the video explaining the need for MPN research and meet patients living with PV, ET, and MF, and the researchers helping to find a cure.  [...]

by Guest Blogger Lina http://linampn.com/ [...]

We've started a new guest blogger feature. Please welcome Lina of linampn.com [...]

Last September, the U.S. House of representatives declared that September is Blood Cancer Awareness Month. In 2012 our focus was to help educate patients about the diseases and the resources available. [...]

Lina, a young woman living with Essential Thrombocythemia, blogs about changing her medication and dealing with migraines: http://linampn.wordpress.com/2013/05/11/an-overdue-update/#more-202

MPN Forum is talking about the "silent gene" http://mpnforum.com/the-silent-gene/ [...]

Annette DeBow will be contributing a series of guest blog posts leading up to her Trek for a Cure [...]

In 2001, we lost our Grandma to a Myeloproliferative Neoplasm (MPN), a rare form of blood cancer that had no effective form of treatment at the time. Nearly five years ago, our mom had a blood draw showing her platelet count was over 4 times higher than normal, and she has since been diagnosed with a similar form of blood cancer. [...]

Our partner on the MF Challenge, the Leukemia & Lymphoma Society, is hosting a few events in April aimed at educating the people living with blood cancer:  [...]

Guest post by MPN patient Emily [...]

By guest blogger Emily, who this week is blogging about Invisible Illness Week. [...]

Guest post by Emily, ET   [...]

Special guest post by PV patient Donna B.   [...]

With increased access to and understanding of technology, people are finding their way online, searching out interests like cooking, basketball and even myelofibrosis.  Once assumed to be the domain of the young and frivolous, a new group has turned to the internet as a means of learning about and connecting to what is important to them.  This is especially true for patients with orphan diseases like polycythemia vera, essential thrombocythemia and myelofibrosis where the next closest patient may be hundreds of miles away. [...]

The MPD Foundation is a decade old this year. We are currently waiting for proposals to arrive for the 2011 grant cycle and are looking forward to continuing to hold patient-education symposia, the first of which was held in May 2010. We continue to distribute MPD brochures to doctors and patients around the world and keep up to date with scientific discoveries pertinent to MPDs. [...]