Helping people understand ET is difficult because we just don't look or act that sick. That doesn't mean that we don't feel diminished, crappy, or worried. We run higher than normal risks for serious blood clots, ischemia in the extremities, and debilitating headaches and fatigue. ET can affect other organs, such as the spleen and liver. It can become more dangerous when platelet counts rise and other blood cells get off balance. In addition, ET can turn into more severe diseases like myelofibrosis and rare and deadly forms of leukemia.
Fortunately, those of us with ET know we're in this for life, and we're a pretty tough bunch.
I offered some points in my previous post that you might want to include if you're writing to your elected representatives today. But don't stop there.
Other things you can do:
- Post a link to the Rare Disease Day home page on your social media outlets.
- Read up on ET. Remember that, because ET is rare, unpredictable, and causes different symptoms in different people, you have to pay attention to your own body, and often be your own advocate. There are a bunch of helpful links to organizations that specialize in MPNs at right. In addition, there are some great videos on MPNs on the Youtube channel Patient Power. More videos can be found on the Mayo Clinic's MPN playlist.
- Start a self-improvement program. MPN expert Dr. Ruben Mesa of the Mayo Clinic in Arizona offered some tips for fighting fatigue in a video I posted in a previous post. Pick up a book! Get on that exercise bike! I wasn't high on my exercycle ... until I realized I could read while pedaling.
- Ask about sharing your history in a patient study. These studies are usually anonymous (your employer won't find out you're sick), and quantitative info can often lead to undiscovered patterns and info that can lead to better treatments. Discuss it with your hematologist or oncologist.
- Participate in a clinical trial or study. MPN Advocacy and Education Internation, the MPN Education Foundaion, and the MPN Research Foundation all have info about research and sometimes calls for participants. Links to these organizations and more are at right. Your hematologist may also be able to direct you to more info.
Be well!
Related: Rare Disease Day: February 29
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ET is a serious disease that requires specialist care. Discuss anything you read here with your doctor. No comments promoting "alternative" or "natural" cures (yes, this includes Rick Simpson's Oil) will be published.