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?
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5 comments:
my kids have hemo c and vwd please contact us if you'd like to talk. thx!
sue........rnsmaxwell@comcast.net
hello, i read ur article and 1 of my boys has hemo c 1 has hemo a and the other has vwd and hemo a b and c...alto its not on there dna we have since found it 2 b aquired from there rare metabolic disorder..do u use ffp? how often? do u bank ur donated blood?? did u do any sports?
I have recently been diagnosed with Factor XI Deficiency and am in need of a major surgery. Do you know of anyone that has any experience with surgery and this disorder?
Glad I found yur Blog. I too have Factor xi and I am jewish.
After an accident and my toddler did not stop bleeding. He was referred to the hematologist, I never heard of the physician. Anyway, 3 weeks after the blood test, the doctor came in and gave me a paper labeled factor 11 deficiency. She explained it to me and when I left the word hemophilia did not cross my mind until I read more and more on articles, so does my son have hemophilia? Like I said this just happened.
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