Questions for People With PAI-1 Deficiency

I wanted to address a few questions that have come up at the bottom of this blog (on the first post, there were a bunch of people with PAI-1 conditions that had questions about treatments, doctor's warnings, etc.

Treatments for PAI-1: As you may know, treatments for PAI-1 deficiency, which is very rare, are all still in experimental phases - just because there are so few of us to test. I'd love to hear what the newest treatments your doctors have been telling you about and how you've fared with them. The two drugs I've heard mentioned for treating PAI-1 deficiency were Amicar and Tranexamic Acid, and the other treatment mentioned has been plasma transfusions (not blood transfusions, which are different.) All of these treatments might be used in emergencies or pre-surgery, when people with PAI-1 deficiency are more at risk for bleeding problems.

Another question that came up repeatedly was about having children. I have heard from several doctors that a pregnancy would be dangerous for someone with a bleeding disorder; bleeding can be a danger even for women without bleeding disorders during delivery, and I'm not sure about the safety of taking our treatment medications while pregnant (anyone know about that?) Too much PAI-1 in the system - the opposite of the problem of PAI-1 deficient patients - can cause repeated miscarriage, I've seen that referred to in medical research, but I'm not sure what the research has show for people like me. I'd love to know if you guys have any info on this! I'm probably not going to try to risk having kids but there are lots of younger women who would find this info very helpful, so please post in the comments if you have any information.

I've heard from several teenagers who were diagnosed early with PAI-1 deficiency. I want to say I think that is the best thing that can happen. I went undiagnosed for a long time and had to deal with myriad symptoms that mystified several different doctors including three separate hematologists. The good news is, once you know what you have, you can treat it, stay safe, get yourself an emergency safety bracelet, carry medication, what-have-you. I think I've been able - with some exceptions, see the kid thing - to live a fairly normal life with this bleeding disorder (I also have some other health challenges, unrelated to PAI-1 deficiency, but that's not for this blog.) I played sports, got married, traveled, had my wisdom teeth out, all that kind of thing. Because I wasn't diagnosed properly early enough, I did suffer through a lot of confusing symptoms - the weird period drama, the anemia, exhaustion, etc - that could have been prevented with diagnosis.

Post questions below! I hope our community can help each other find answers. Good luck!