What's in a Name?

Wow! I can't believe that the school year has ended already. Each year goes by in the blink of an eye. I mean it was just yesterday that I was welcoming my 120 students into my classroom, wasn't it? Needless to say, the end of the school year has kept me quite busy. You see, I teach junior and senior students English, and as a senior teacher, I attend senior recognition night, graduation, and prom (not to mention the grades and stresses of pushing seniors to turn in work needed to pass). This keeps me quite busy, so I apologize for the lack of posts.

If you notice the title of the blog has changed a little bit. I had originally named it "Hemophilia C" because I prefer that term for my disorder as opposed to a Factor XI Deficiency. After showing my blog to some of my friends at the National Hemophilia Foundation, they recommended I try to keep everything Factor XI, as that phrase is more widely used. Taking their advice, I changed the title of the blog, and I'll try ti refer to it as both a Factor XI Deficiency and Hemophilia C.

Personally, I've had bad experiences using both names. I've found that doctors and nurses and other medical personnel look at my like I'm crazy whether I tell them I have Hemophilia C or a Factor XI Deficiency. I think I prefer to use Hemophilia C because medial personnel hear the word "hemophilia" and take me a little more seriously. At least they have heard of Hemophilia A & B, so they know somewhat what I'm going through or why I'm in the ER. When I say factor XI deficiency, people tend to get confused, as they don't associate the term with bleeding issues as quickly as they do the word "hemophilia." For those reasons, my doctor told me to put "Hemophilia C" on my medical alert bracelet.

When it comes to non-medical people, the word hemophilia is more known, so they already have a basic understanding of my condition. If I tell them I have a factor XI deficiency, I usually end up going into a long explanation about how blood clots and how I'm deficient in one of the 12 factors blood needs to clot properly.

What do you think? Does the title of the disorder make a difference? Have you had any personal experience with either term? Which do you prefer?

Welcome to my Blog

Well, I guess I have set up the blog as best as I can, so it's time to start adding some text to this bad boy. Besides, what else is there to do during the third straight evening of heavy, heavy rain in southern Wisconsin?

First, let me tell you about myself. I am 28. I live in a suburb of Milwaukee, Wisconsin, USA. I am white, but I am not Jewish. For many that seems to be the oddest part of my hemophilia--I have no connection to the Ashkenazi Jews in Israel. Despite that I have a factor XI deficiency, which is now known as Hemophilia C. Lucky me, right?

From what I can tell from the National Hemophilia Foundation Web site, I am one of about 2,500 people in the United States who have this condition. I guess you can say that makes me quite unique! :) That is the reason for this blog--networking and meeting people. I have yet to meet or even hear of someone else who has this disorder. I was recently interviewed for an article that will be in NHF's HemAware magazine, and the reporter said she didn't even know of someone else with the disorder. I guess it would just be nice to talk to someone else who is living the same life that I am, who experiences the same difficulties that I do, someone to relate to, someone to share treatment ideas and bleeding difficulties with...maybe...maybe with this blog I can find someone who truly understands...