Share info for Rare Disease Day

It's Rare Disease Day! Time to write your legislators and educate your friends and neighbors about rare diseases generally and essential thrombocytosis specifically.

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.

For Rare Disease Day: A one in two thousand chance ...

Your chances of experiencing a giant asteroid collision in your lifetime
are actually a little better than developing ET.

It's almost Rare Disease Day (February 29), and you've got a rare disease if you have ET; only about one in every 2,300 people develop essential thrombocytosis in their lifetime.

Just for fun, here are 10 other things that have about a one in two thousand chance of happening:

1. Experiencing a collision between earth and a giant asteroid. Those were the odds Carl Sagan, space maven, gave in his book, "Pale Blue Dot," to that catastrophe happening within anyone's lifetime.

Rare Disease Day: February 29

A rare date for rare diseases! February 29 is Rare Disease Day worldwide. Not sure it's something to celebrate, but here's your chance to get more involved in getting diseases like ET more publicity.

Rare Disease Day has its own Web site organized by EURORDIS, a federation of rare disease organizations throughout Europe. The site includes links to observances of Rare Disease Day in various countries around the world. (Here's the U.S. events page.)

The MPN Research Foundation is also taking stories about patients with MPNs on its Web site in observance of Rare Disease Day.

If you live in Michigan, there is a special event at the capitol February 25, 11 a.m. UPDATE: THIS HAS BEEN POSTPONED TO DUE WEATHER CONDITIONS. BAD ENOUGH TO HAVE ET WITHOUT GETTING ON THE ROAD FEBRUARY 24/25. The focus will be on persuading legislators to expand the the network of support for those with rare diseases and to create a Michigan Rare Disease Advisory Council. If you cannot attend the live event, mark your calendar for February 29 and send your legislators an e-mail or letter. You may want to include some of the following facts:

Dr. Mesa tells you how to fight fatigue

Dr. Ruben Mesa, Mayo Clinic in Arizona, has several videos on YouTube that I've shared in other posts. Here's one that offers 10 practical tips to fight fatigue:

All in the family: My dad's history with ET

Dad in 1953, ET-free

Someone recently asked me if my dad, who also had essential thrombocytosis, died from complications of ET. The short answer is "no." Dad was already sick with end-stage COPD when he was diagnosed in his 70s.

However, the way his ET was managed and the lack of info about his disease at the time might be of interest to others, so here's his story:

Dad's ET diagnosis started with a small blood clot in his leg. The COPD made it very difficult for him to do any exercise, and his circulation was poor. The blood tests done when the clot was diagnosed showed that he had a platelet count in the 800s.

Downward facing dog for ET!

Arizona State University is running a study to see if yoga can help with the symptoms of MPN patients. I filled out the participation survey, but because of the high level of response, I won't hear for a few weeks whether I've been accepted.

If you're interested in more info about the yoga study, you can visit the Web page here, though you cannot access the videos unless you're a study participant.

Your medical records could help others with ET

Would you give up your medical records to cure disease?

That's the question a New York Times review piece examines this morning. 

If the answer is "yes" for you, talk this over with your hematologist at your next visit. Your records could uncover surprising info that would help your fellow patients with ET.

Sometimes you just gotta sing the blues

Lately I've been feeling a little overwhelmed and a little blue. My elderly mother is going through some upsets and I'm her primary caregiver. My cardiac and blood checks are coming up in a month. And I'm in a tizzy over that sleep test, and not ready for more bad health news that might reveal. I'm thinking of putting that off until after I've seen my GP in June.

At times like these, it's a drag to get out of bed, much less put on your perky face and go to work as Little Mary Sunshine.

In this vein, thought I'd share Barbara Ehrenreich's astringent essay, "Smile, You've Got Cancer," which outlines the relentless pressures on cancer patients to "think positively." The essay was written some years ago, and was folded into her book, "Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America" (2009).

In the book Ehrenreich, who went through breast cancer treatment, gives voice to those of us with serious illnesses who sometimes feel flummoxed or even depressed by the pervasive insistence in our culture to "stay positive."