Also born with congential TTP

[megirl]

I came across your website in serach of a group with TTP to talk to.
What a perfect one to find :). I am 27 years old and I too was born
with congenital TTP. I recieve blood transfusions regularly. If you
have any information to share with me or if I can be of any help to
you I will gladly do so. Thank you very much for having this group
available.

[in...@congenitalttp.com]

Thank you for offering to share. My daughter receives Plasma through
an IV every three weeks. We had a port installed in her chest to make
it easier on her. Do the Plasma treatments not work for you?

Bruce

[megirl]

Yes plasma infusions work for me. I receive four units of fresh
frozen plasma every two weeks. I have actually been considering
getting a port here lately. It is getting a lot harder to find a good
vein anymore. I guess with getting stuck every two weeks that is to
be expected. I am on scheduled treatments now, however, when I was
younger I received them only on an as needed basis. Sometimes i would
go a couple months without needing a treatment and othe times it would
be just a few weeks. It varied depending on my health and the time of
year. My parents wanted to do it this way to prevent me from having
to get stuck and treated more often than necessary. Thank you for a
quick response and hope to hear from you soon.

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