My self-improvement kick #4: The anti-inflammatory diet

Here's an anti-inflammatory diet food pyramid.
Notice that the bottom tier reminds you to drink
lots of water and that the vegetables are where you
usually find grains on a conventional diet. 

At today's MPN conference in Novi, Michigan, there was lots of talk about inflammation. An oversimplification is that inflammation is what makes us feel bad as ET patients. One of the experts suggested that an anti-inflammatory diet might be helpful for MPN patients like us. So I'm embarking on a plan to move in that direction in hopes it helps with energy levels.

I'm also hoping that the anti-inflammatory diet, which does not include dairy fats and red meat, might also help me reduce my cholesterol, which just tipped over into the "high" range yesterday at a total of 211 (even though the HDL and LDL are within allowable limits). Since high cholesterol increases your risk of blood clots, already a risk for me as an ET patient, I'm hoping the anti-inflammatory diet might also help me bring my cholesterol down next year.

And if helps me lose a little more weight, even better.

News of interest to ET patients

Pluto was kicked out of the list of planets in our solar system
the same year ET was reclassified as a cancer? Coincidence?

From time to time I like to post things I've read that relate to me as an ET patient. So here are some recent articles that might interest you, too.

Having trouble paying for meds? I learned from a fellow MPN patient about GoodDays, an organization comprised mostly of pharmaceutical companies, that will help patients like us with prescription drug costs.


Right now, all MPNs are on GoodDays's list of covered diseases, and commonly prescribed ET medications are listed in their formulary, including anagrelide (Agrylin), hydroxyurea (Hydrea), (ruloxitinib) Jakafi, and pegylated interferon (Pegasys).

Should Americans have to give up genetic info to their employers or pay more for their health care benefits? That's a what HR Bill 1313, Preserving Employee Wellness Programs Act, might do, as reported in the Washington Post.

My ZZ experiment

Itching (pruritis) is a troublesome symptom for some ET patients because, as PV Reporter David Wallace explains, the overproduction of mast cells results in too many histamines. It's like having hay fever all the time.

Wallace writes about the Zyrtec+Zantac (ZZ) treatment for his polycythemia vera itching, and I thought that I'd give this a try for a week for my own itching. My experience was mixed.

Here's more:

Budd-Chiari and ET

No, no, not Bud and chianti! It's Budd-Chiari!

In my last post, I talked about acquired von Willebrand syndrome in ET patients. Here's another acquired condition that ET patients are at somewhat higher risk for: Budd-Chiari syndrome (BCS)

Few ET patients get Budd-Chiari syndrome, but a large percentage of BCS patients do have an MPN, usually polycythemia vera, our sister disease, but a fair percentage also have ET. Because BCS is serious in patients who do develop it, it's good to know about. Treating your ET as directed by your doctor is your best defense against BCS, so if you already know you have ET and are following doctor's orders, you have a better chance of not developing BCS.

BCS is caused when the veins that flow to the liver become blocked, in our case due to our many platelets and tendency to clot. This is serious because it can cause the liver to shut down and can be fatal if not treated.

Patients with BCS may have upper abdominal pain, fluid in the abdominal cavity, or an enlarged liver that shows up on an ultrasound. Blood tests can help confirm BCS, and an MRI can show doctors where the blood flow to and from the liver is blocked. Heparin or warfarin, two common types of blood thinners, might be used to dissolve blockages to the liver. Sometimes stents are used.

There's probably more than you want to know in this 2004 New England Journal of Medicine article about BCS. But the pictures and diagrams are cool!

Be well!

Related: Von Willebrand disease and ET

Related: EM and the weekly poll

(This post covers another oddball condition associated with ET, erythromelalgia)

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von Willebrand disease and ET

I always imagine a character named
Count von Willebrand when I hear
about VWS. He would look something
like Fearless Leader from
Rocky and Bullwinkle.

As an ET patient, you've doubtless been told that both clotting and bleeding can be complications of our disease, and, like me, you've probably been stymied about this paradox. How can we be both clotters and bleeders?

For a small percentage of us, the problem may lie with the von Willebrand factor.

Without getting too technical, the von Willebrand factor is a bunch of molecules that helps control clotting in your blood. Some people are born with a deficiency in the von Willebrand factor, and they have what is known as von Willebrand syndrome (VWS). The chances of you having ET and being born with the even rarer VWS is close to statistical impossibility. In addition, if you had been born with VWS, you'd know it by now.

However ...

Meeting and advocating with my fellow "orphans"

Some of the many speakers at Michigan's Rare Disease Day
event in the Michigan State Capitol February 28.

Tuesday was Rare Disease Day around the world. Michigan's Governor Rick Snyder and our state legislature declared February 28 Rare Disease Day in my state, as a special event was held in the capitol building. I was there to gather some highlights, and I urge you to consider writing your elected representatives with a post-Rare Disease Day message.

Rare Disease Day is promoted by the National Organization for Rare Disorders (NORD). You can learn more about them in the link at right.

Our Michigan event was pretty small--about 80 patients with a variety of rare diseases, their families, friends, and caregivers. As I listened to the speakers, some patterns began to emerge that most of us with ET can relate to: