EM and the weekly poll report

EM is rare, but ET can be a cause. It starts with
a burning sensation in hands, feet, ears, or face,
and can spread. 

File this info in your "something to keep an eye out for" folder: Erythromelalgia, EM for short. It's a rare condition that can be caused by ET.

A friend sent me an article from the Washington Post last week about a woman in Maryland who had a mysterious foot problem:

Along with the sensation that her feet felt unusually warm, the skin on the second toe of her right foot looked inflamed. Weeks later, she noticed a small blister. ... Changing footwear didn’t help. Sometimes her toe would itch and feel tingly. At other times, the redness seemed to lessen, but it never disappeared entirely.

Doctors treated the woman for a fungal infection, but the burning sensation got worse and spread to other toes. Diabetes was ruled out as a culprit. So were heart problems. What was eventually diagnosed as erythromelalgia is sometimes caused by ET or some other genetic mutation. In some cases, the problem has no known cause (which was the case of the Maryland woman).

I looked around for more info about EM and ET, and found some good info from a 2013 article in the Korean Journal of Pain. Up to 65 percent of MPN patients can suffer from EM. The good news is that EM symptoms generally clear up with aspirin therapy and chemotherapy.

Let me say it again: Aspirin and chemo usually clear up EM symptoms in ET patients. 

The cautionary tale for ET patients here is that EM often looks like an infection or an allergy, and the worst part of the diagnosis is when doctors do a bunch of tests that show nothing while the symptoms get worse or more frequent. In fact, ET is the cause of 20 percent of EM cases.

You can get to a diagnosis (and relief) quicker if you tell health care professionals that you have ET.
Also remember that many generalists (and a lot of specialists) really know nothing about ET. You can update them on your condition quickly if you carry a fact sheet about ET around with you in case you get blank stares from docs and nurses.

Last week's poll asked what concerned you MOST as an ET patient. "Not knowing how much worse my disease might get" was the top preoccupation, a concern of 75 percent of participants. "How long will I live" trailed in the list of top concerns with 33 percent of participants. "Affording care and treatment" and "Where I can passing ET along to my children" tied for third in the concern rankings with 25 percent each. "How chemo might affect me" elicited the fewest votes of concern with just 16 percent.

This week's poll asks what symptoms about ET are most bothersome for you. You can check as many symptoms as you like, and I'll report back next week.

Be well!