Why your doctor doesn't think you have symptoms

Is this how your doctor looks when
you tell him you feel fatigued, have
headaches, have bone pain, or just
feel crappy? 

I've been at this blog and Facebook page for over a year, and ET patients commonly complain that their doctors don't believe they have symptoms ... even though our symptoms are pretty well documented in "the literature," as the scientists say.

In catching up on my ET reading, I have some theories about this:

ET patients are most often diagnosed in their 50s and 60s. The fatigue and aches that can be a symptom of ET may be waved away as age by both patients and their doctors. And, to cut the doctors a break, it can be almost impossible to determine whether our ailments are age or disease related.

Doctors may also be skeptical about our symptoms because we aren't complainers. I was struck by an MPN specialist in one of the many YouTube videos available about ET, who noted that his patients seemed to be asymptomatic before their diagnosis and then, after they learned they had ET, claimed to have ET symptoms. It was pretty clear that this doctor felt his patients were rather suggestible; they only starting having the symptoms AFTER they learned what the symptoms were. 

Incremental care and ET

Dr. Atul Gawande's article in The New Yorker
about "incremental care" should make all of
us with ET think about the care we need to
maintain quality of life ... and which health
care providers are most likely to provide it.

Dr. Atul Gawande has been making the media rounds recently promoting a concept called "incremental care," and I recognized at once that this is exactly the kind of care most of us with ET need more of.

Gawande notes that research and money tends to cluster around what he calls "heroic care"--months of the latest cancer cure, major heart surgery, organ transplants--the kinds of treatment needed to cure an acute problem and make it go away forever. As I researched Gawande's interviews and articles, it occurred to me that "heroic care" is the kind of care that spawns colored ribbons, 5K cure walk/runs, and singles out the brave "survivors." These "heroic care" efforts are great, and we all have friends and relatives who have benefited from them tremendously.

But we ET patients are never going to be "survivors." Barring an outright cure, we're all going to die with, if not from ET. So incremental care will continue to be an important part of our treatment, and I think we need to make sure that we get it by educating and enlisting our primary care physicians more.

2017 ET events

Happy New Year, everyone!

MPN Advocacy & Education has released its education events for 2017. Please note that there are several programs taking place around the U.S. and one in Melbourne, Australia, April 28. (I know we have readers from Oz here, so please spread the word.) I do plan to attend the program in Novi, Michigan, in March. So if you have questions you'd like me to take to the event, please post them here, or visit the FB page where you can message me.

Also, Rare Disease Day is coming up February 28. This is a worldwide observance, and there may be events happening in your area. Check it out at the Rare Disease Day home page. I do hope to attend Michigan's event this year. I missed it last year due to a combination of health and weather crises. (Planning things here in the Upper Midwest is dicey between December and April ...)

Shortly, I hope to come up with some ways for you to observe Rare Disease Day and impact lives positively in your area. So watch this space for details and ...

Be well!