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PAF: newly diagnosed


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My father, age 78, was recently diagnosed with pure autonomic failure (plus no sympatheic nerves in the heart). His orthostatic BP is severe with drops into the 70-80's when standing (and dizziness). he has been worked up at the NIH and confident with the diagnosis, but needs guidance on how to live with this disorder and a doctor to manage his everyday needs. He is otherwise healthy and is getting very frustrated. He lives in Maryland and I wondered if 1. anyone knew any physicans in this area that might take on a new patient and 2. what type of physician do most people get managed by (cardiologist, neurologist, etc...) and 3. Are there any phone type support persons (he doesn't use the computer)?

I appreciate any guidance possible.


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Hello, and welcome to the board.

If you haven't checked out the section of DINET called "What helps", I'd suggest that you start there.


Also, the NDRF has a downloadable book, in PDF format, that discusses everyday-coping.


As for phone support, Michelle and I have been trying to work something like that out, but for now I'd refer to you the NDRF, where they do have staff to answer the phones. Also, there are some support groups around the US where you may be able to hook up with other folks who have a similar diagnosis.



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I think Nina gave you some great links, the NDRF has some very informative resources, and friendly folks to talk to on the phone who can help you and your father better understand his condition. I hope that you can get in touch with someone, and definitely read the handbook, it is very helpful. Suport groups are an excellent idea too, because it's always nice to hook up with others who understand. Good luck to you and your dad :(

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