National HHT Awareness Month
Tue., June 16, 02:50 PM
You’re never too old to learn something new. This past weekend I participated in an online discussion about HHT. Senate Resolution 141 recognizes June 2009 as the first National HHT Awareness Month.
I am not going to go into detail about the discussion itself (which may be proprietary, after all), except to say that it took about an hour, and it was fun — once I figured out where to type my comments. Everyone in the discussion had a pseudonym, but I do not believe that anyone I know was involved. This is amazing to me, because in all my life I have never met anyone who had the disorder who was not related to me!
As I may have mentioned before, HHT is hereditary hemorrhagic telangiectasia, bleeding caused by structural irregularities in the blood vessels (as opposed to bleeding disorders like hemophilia). You may know that I had a surgical procedure last month to control my own HHT. HHT was first described more than a hundred years ago and, I am told, it is not especially rare. There are statistical definitions of unusual, rare, or whatever. I think one in five thousand is rare, but evidently it is not.
One of the simplest diagnostic proofs of HHT — outside of the bleeding — is little red spots called telangiectasias on the mucous membrane and on the skin. The ones on the skin will disappear when you apply pressure but will return as soon as you let go. I never minded them before, but as one ages… I have a huge red spot on the end of my nose.
Going for the initial screening brought me to examinations for arteriovenous malformations (AVMs) that can be serious, even life-threatening. A chest echocardiogram showed no heart or lung AVMs, and a brain MRI had similar results. I didn’t expect any difficulties. I think that, at my age, such problems would have already come up. Think of all the scans I passed just to be admitted into chemo!
Telangiectasia is a difficult word to say, even for professionals, and U.D. has given up. When she says “televisions,” doctors know what she means. I said something recently about AVMs, and she didn’t know what they were. Easy explanation: “wide screen.”
