Bleeding Disorders in Mito?

[Guest guest]

I received a call from Hematology on Friday. has been

bleeding on and off for a few years, worse lately with drops in her

red cell count. They finally identified the " cause " of the problem.

Something they are calling a Plasminogen Activator Inhibitor defect.

This defect means it is very difficult for her body to make and

maintain a blood clot when necessary. They are tryign to determine

how best to treat. Some of what they suggested, like birth control

pills, was vetoed by our mito docs becuase of the clot/stsroke

potential. They are considering another drug, Amicar, which as a

similar safety profile. That makes me quite anxious as lies has

had 5 strokes (assuming and lies have the same base

mitochondrial defect). From some of the comments during the initial

consultation appointment I feel strongly that the hematologist really

doesn't know or understand mito.

Have any of you ever heard of this defect before? If so, how was it

treated? Was treatment successful? If we don't get a handle on this

soon, transfusions will be necessary. Her RBC is dropping

dramatically each month with no rebound between cycles.