Bleeding Disorders in Major Media

Thanks for the comments I've gotten thus far - I'm excited to have contact with other people who have, or are interested in, PAI-1 deficiency.

I was reading the March 2010 issue of Health Magazine, and I came across something that might have saved me ten or fifteen years of dangerous bleeding and the trauma of a botched surgery in which I nearly bled to death. It's a very simple Q&A - but not one doctor suggested it until I was over 30. I was so excited to see it! I hope it will save many women the pain and suffering I experienced.

From Health's "Embarrassing Questions:" (This is just a partial bit of the Q&A)

Q. My flow is very heavy...is there anything I can do?

A: If you need to change your pad or tampon more than once every one to two hours, or if your period lasts more than seven days, talk to your gyno about being tested for a bleeding disorder. New research shows that 25 percent of women who have a super-heavy flow may have one and not know it. (!!!)

25 percent! For years doctors brushed me off by saying I "probably had endometriosis" - which it turned out I didn't have. No, I had a bleeding disorder. I hope other young women will be helped and get themselves tested by a good hematologist - i.e. one that knows how to run more than the five standard tests.

PAI-1 Deficiency - treatments

Hey readers! Don't know how many readers of this blog there will be, given that PAI-1 deficiency is a fairly rare - like one in a million - bleeding disorder. Too much PAI-1 isn't good - it's a sign of inflammation and a sign of danger for stroke - but too little gives you a tendency to hemorrhage.
But I wanted to start something for people who might have this disorder but have questions or discuss problems related to bleeding disorders.
Plasminogen Activator Inhibitor-One Deficiency is a problem, essentially, not of clotting, but of not keeping the clots around large or long enough. Some of the indicators are:
--uterine or nose bleeding
--easy bruising
--cuts that bleed a little bit at a time, for days
--anemia
--abnormal bleeding from surgeries and injuries, such as dental work or head trauma.

There are not enough of us with PAI-1 deficiency for doctors to really know how to treat it. Two possibilities are:
--blood transfusion with plasma (the factors we are lacking are in the plasma, not the red blood cells)
--A drug that helps clotting called Amicar. This is not a guaranteed fix - doctors and researchers basically think it helps stop our kind of bleeding, but not enough research is available to prove this as a failsafe method.

I myself was tested for this by a top hematological oncologist in Seattle after I nearly bled to death during a routine operation. It was very scary, especially since I had been tested for all the usual stuff - platelets, hemoglobin, PTT and they had all come in normal. It wasn't until my brilliant doctor noticed my TPA was off that she ordered - out of a specialized blood lab - a test for PAI-1. It's not a commonly done test, so if you live in a small town, or not next to a major research or university hospital, it may not be available. However, I urge you to continue to pursue the tests even if your platelet counts are normal. Go find a hematologist who knows platelet disorders.

Please comment if you have this disorder or are interested in discussing it.