hello to whomever reads/posts here.
i am the mother of a 27 year old man with hemophilia. due to being born
with
hemophilia, he has suffered many more diseases and disorders, some
directly
caused by bleeds, some by clotting factor, and now some by side-effects of
meds. i am just frustrated and grieving right now, after learning of the
latest: osteo****osis due to HIV meds; elbow is shot due to his HTC not
giving proper care over the years and suggesting intervention when it was
still possible; infectious disease doc wants to do a liver biopsy to look
at
liver damage from hepC. i'm sorry if i'm freaking out anyone with young
sons
with hemophilia, but i'm telling you, no matter how things look now, be
vigilant about the care you receive. don't count on the docs or the HTCs
to
be on your side. if they are, great, but if they aren't, find out how to
get
some who are.
--frustrated mom
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