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Cuety 11-12-2004 11:11 PM

Reintroduction of myself
Hello all, my name is stefi
and I haven't been on here in a while. I am very
excited to see that the boards are starting to be
more active. I have something very similar to AVM.
I have CVM which means that the malformation
is in the capillaries instead of the arteries. I was told
until I was eighteen years old that it was hemangioma.
I took it upon myself to research and go to Boston's
Children's hospital. The problem is, The CVM is on
my entire right leg all the way up to my waist. Because to the CVM, my right leg was growing much faster than
the left so I had surgery when I was a child
to help slow it down. It worked thankfully, because I would have had one lef a foot longer than the other.
That is all of the surgery that I have had and I am
a little overwelmed with things to research what can be done. I am in a lot of pain especially when it is cold and
I just can't take it anymore. I don't want to take tylonol all my life or wear stockings that don't work. I don't know if anything can be done for me because the birthmark is so large. Doctors are overwelmed with it and tell me there is nothing they can do. Someday I will get it fixed though. I am 21 years old with a 14 month old baby and going to nursing school. I hope someday I will be able to sit down and get this done and talk to the right people. I still have a lot of hope. I am just a little impatient. ::)

imported_missy 11-13-2004 02:26 PM

Re:Reintroduction of myself
Hi there!

I have heard so many good things about Boston Children's... but keep in mind that there are other physicians out there.

The shame of it all is the 18 year mis-diagnosis. That is why the VBF's mission statement includes educating the medical community.

I wonder if you'd consider participating in our next Day of Awareness... being a nursing student, it would be a great idea to give out some literature at school (nothing like being educated at school, is there :) ). Plus, with your history, it would really carry more weight. Would you consider that? You don't have to donate money (although we like money), but helping raise awareness helps everyone.

Take good care and thanks for re-introducing yourself!


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