How to Cope as an MPN Patient or Caregiver
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. [...]
For the past several months we've kept you informed and taking action on Medicare's pending decision of whether to provide coverage for people with myelofibrosis seeking a stem cell transplant. Currently there is no official ruling from Medicare on whether this treatment is covered, leaving many patients to risk paying out of pocket (running potentially several hundred thousand dollars) or scrambling to find alternative ways to cover it. [...]
The Centers for Medicare & Medicaid Services’ Coverage and Analysis Group released a proposed decision memo Thursday on modifications to the National Coverage Determination for allogeneic Stem Cell Transplant. CMS has proposed to expand coverage through Coverage with Evidence Development (CED) for allogeneic HCT to include myelofibrosis, multiple myeloma and sickle cell disease. [...]
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. [...]
What can I do to help?" is probably the most common thing we say to a friend who is ill or in need. But despite our best intentions, this may not be the best way to lend a helping hand. When a person is diagnosed with an MPN blood cancer, patients often feel too overwhelmed or too proud to know how to respond. Now, here's some ways for you to support a sick friend. [...]
Our support means you are never alone. [...]
Tomorrow is the first day of September and this means it's the first day of Blood Cancer Awareness Month (BCAM).
All through September, share your stories & advice -- help us in the fight against blood cancer. We'll be using BCAM throughout September and we encourage you to do the same! [...]
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. [...]
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. [...]
... and why exactly does it matter to MPN patients? [...]
Guest post by MPN patient Emily [...]
By guest blogger Emily, who this week is blogging about Invisible Illness Week. [...]
Guest post by Ann Brazeau [...]
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. [...]
About the Blog
Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..