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...
7 comments:
Dear Josh,
Read the article about your factor XI problem after surgery, and my main question is why was your surgery done without having a PTT? It is standard for almost every area of the body that is fibrous and rich in blood. At 67 I am a female with factor XI deficiency. When I was 4, I required 2 transfusions after a tonsillectomy, and my parents never knew why that happened. But in the late 1980's before having foot surgery, a routine PTT picked it up, and I have been treated for the condition ever since, and I have had some incidents
Just to let you know. I needed cataract surgery, and had conflicting information about whether it would be a truly bloodless procedure for me. After much consulting, it was determined that I did need to take FFP the afternoon before. The first surgery was last week, and I had no bleeding at all. So, I will do the same in a few weeks for the second eye.
Susan H. Lake Worth, FL
I was diagnosed with FXI after a wisdom teeth extraction. The bleeding started a day after the procedure and continued for two days over a weekend. Finally went to the ER and was in the hospital for four days while they tried to contain the infection that had set in. I had scaling done a few weeks later and they gave me plasma and of course had no excess bleeding.
I had always wondered why I bled so much longer than everyone else after cuts (even shaving would go on for a couple hours, but nothing severe), or had frequent bruises where I didn't remember hitting anything.
Oddly my nephew has been diagnosed with the same disorder. We are not Jewish either which makes you wonder if this is more common than suspected.
I am a 33 year old female with factor xi deficiency. I was diagnosed after the birth of my first child in 2003. I had a c-section and the bleeding was so uncontrolled that i had to have a blood transfusion. At the time, i worked for a hemotologist/oncologist office so the doctor ran some tests and found out that i had this disorder. It all made sense to me after this---i've always had nose bleeds, issues with cuts that just won't scab, issues when my wisdom teeth were extracted, and after an ovarian cyst removal in 2000, i lost so much blood that i was severely anemic for months. I've also always had extremely awful/long menstrual periods. I am of Ashkenazi Jewish descent (on my father's side). My sister was also tested after my diagnosis, and she also has it. Oddly, she has never had any issues with it. During the births (c-sections) of my other two children, my hematologist gave me recombinant 7a during the surgeries, put me to sleep (they stated they didn't want to risk putting an epidural in my back and it resulting in bleeding). They stated they had some issues with some of the cauterizing, but other than that, this seemed to do the trick. On a day to day basis, i don't have any horrible issues with the disorder. I do still have the terrible menstrual periods, which i've kind of learned to deal with. My nose bleeds and when i get cuts/scrapes, they take longer to heal.
I was diagnosed with FXI Deficiency 2 years ago as was my son. We live in Wisconsin and are treated at Hem through Froedtert and Children's Hosp. My hematologist is always intrigued by the fact that we are Irish and have no Jewish decent. I was finally correctly diagnosed after suffering post-op hemorrhaging 4 times that required emergency surgeries to stop the bleeding. My first hematologist could not figure out what my bleeding disorder was because everything came back normal. I then went to Froedtert in Milw and they tested my factor XI which came back as being deficient. My 8 year-old son also has the deficiency. Medical providers have no idea what it is and it has to be explained whenever I fill out a medical hx form. The hem dept is just intrigued because its such a rare disorder. My guess is it's just underdiagnosed.
I am a 25 year old woman with FXI Deficiency. I was diagnosed because my father, all of my siblings (2 sisters and my brother) have it. My dad is of Jewish descendent but my mother is not and does not have the disorder. I found it interesting after I read your article that someone finally said that it is not just an autosomal recessive disorder because that is not the case in my situation!
I was diagnosed with factor 11 after I had a severe nose bleed after plastic surgery of my nose back in 1985. I am getting a tooth extraction next week. Any advice?
There is a lot of conflicting info out there as I started to research this disorder. I learned I had Factor XI deficiency after my 33 year old niece died from a biopsy of a brain tumor on the surface of her brain, which led to uncontrolled bleeding and pressure in the brain, causing massive brain damage two days after her biopsy. They discovered her bleeding problem during the biopsy, diagnosed her as Factor XI deficient, and gave her plasma afterwards but she still had uncontrolled bleeding. I am 63 and had surgery (a lumpectomy) scheduled for early stage breast cancer ten days after her death. I asked my PCP to test me and I am in the mild - moderate range, as I suspect was true for my niece. Her father (my brother) is an Askanazi Jew but her mother was not. My niece's brother was then tested and he also has it. He had a history of nose bleeds growing up but his sister, who died, did not. I elected not to get plasma prior to the surgery and just hoped all would be OK and I was lucky. I was more worried about the risk of infection and/or allergic reaction to the FFP.
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