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TOPIC TITLE: FACTOR 11
Created On 3/1/05 5:21 PM
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UCY
Junior Supporter

Posts: 4
Joined: Mar 2005

3/1/05 5:21 PM
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Does anyone have it? What are your symptoms? How did you find out you have it? Any sites you aware of with good information?
 
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BMY7
Junior Supporter

Posts: 1
Joined: Mar 2005

3/13/05 10:43 PM
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You can get a little general information from web pages like:

http://www.hemophilia.org/bdi/bdi_types9.htm

http://www.hemophilia.ca/en/2.3.7.php

http://www.emedicine.com/med/topic3515.htm

http://www.medicine.ox.ac.uk/ohc/fxidef.htm

and you can find lots of others just by inputting "Factor XI Deficiency" into Google.com

In general, affected individuals have relatively mild bleeding problems and are most likely to run into bleeding only after trauma, surgery (although even pulled teeth may bleed quite a bit), or childbirth. Menses may also be a bit heavy lifelong, so iron supplements are a good idea to prevent iron-deficiency anemia if you are a woman. You should wear a medic-alert bracelet with the diagnosis "Factor XI Deficiency--Administer FFP for uncontrolled bleeding!" so that doctors know what to do for you if you are unconscious after any trauma. You should keep an oral antifibrinolytic agent around such as tranexamic acid or aminocaproic acid (both are stable pills) which you can use for 5-7 days around menses, or for minor trauma, or for dental extractions. For anything more significant than that you should talk to your doctor about preparing for elective surgeries with fresh frozen plasma infusions (FFP), or if it available, a new product, recombinant activated factor VII (rFVIIa; NovoSeven(R), Novo Nordisk, Bagsvaerd, Denmark), although this product must be used with care under expert supervision.
Individuals are most likely to have unusual bleeding if they inherit a defective gene from both parents. If that is your situation, then it may be important to screen your (prospective) spouse to see if (s)he is affected or is a carrier (ie defective genes on only one of the two chromosome-4's) since in that case your children may also inherit the full-blown condition.
Kol tuv,
Be well!
 
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