Wednesday, February 28, 2018

It's Rare Disease Day

It's Rare Disease Day, which falls on February 29 (a rare day), but on February 28 in non-Leap Years. I want to mark the day with a little info about where we've been and where we need to go as ET patients.

While ET is recognized by the National Organization of Rare Diseases, ET does not fit the legal definition of "rare." A "rare" disease is one that affects one in 200,000 people or more. ET affects about one in 135,000 people.


Why does that matter?

Thursday, February 15, 2018

Thinking about shingles

I've noted before that ET complicates everything, and that includes protection against the shingles virus.

Shingles affects about one in three people over age 65. Those who had chicken pox as children already have the shingles virus (though this is not a guarantee you will get shingles). Shingles is not pleasant, and a more severe strain of the virus can cause painful blistering for many months. Blisters can also leave faint scars.

Those of us with ET, especially those on chemo, are considered immuno suppressed and may run a higher risk of shingles and for getting a more severe case.