Vascular Birthmarks Foundation Forum - View Single Post - Heart Problems and CMTC
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Old 03-30-2010, 11:45 PM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 235
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Missy,
What is tefra?

They told me that they have to consider her as having a syndrome. I didn't understand that because that isn't the term that has been used by any doctors and they have been careful to say she does to have any syndromes related to the vascular condition so I was confused by that. There doesn't seem to be anyone else in the group that I can talk to. The parent advocacy group in SD is who told me to contact this group. Basically they made it seem as if it was something they didn't know about they didn't want to deal with it. I am not trying to get something if I am not entitled but I am getting denied by all groups in SD. I was told that one group couldn't help us because she doesn't have a developmental disability and so then I was referred to the chronic health conditions group. I guess to them she is not sick enough for a chronic health condition so I am not sure where Becca fits. The part that makes me made is that if my husband or I quit working becuase of this we could probably get help but since we are both working hard to pay our way in life then we are getting the run-around.
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