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.