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Paraganglioma
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nreyn3 posted:
Hi, I'm not sure where I can go to get more information. I just need some direction please. My mother passed away when she was 27 years old from what was diagnosed as a fast growing (rare form of) paraganglioma.

From my understanding heres a quick description. She was diagnosed at 25 after having what the doctors thought was whiplash. It had started as an inner ear tumor, travelled down her spine despite chemo and surgerys. She eventually became paralyzed from the neck down. She decided it was time and quit all treatment and died shortly after.

My concern is not so much for myself. Although I can say I waited to have children until I was older than 27. I am almost 28 and expecting my first child and I fear that she will inherit this aweful thing from me.

Is there anyway I can get copies of my mothers medical history so I can learn more? Any ideas on how I would go about this? There seems to be more information on the internet than there was 10 years ago, but there is so much terminology used and not knowing exactly which form she had makes it incredibly difficult to determine if it's somthing passed genetically. I now wonder if they just said paraganglioma because thats the closest diagnosis they could get at the time since it was in the late eighties.

Any input would be appreciated!!
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