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HNPP

sadie06 · 2013-02-15 12:57:18

I have more or less been diagnosed with this condition, and even though a lot of literature classes it as a rare disorder (roughly 1 in 100,000) it is thought to be under diagnosed, and could be as prevalent as 1 in 5,000. Given this, I was astounded at the lack of knowledge by all health care professionals (with the…

15-02-2013 12:57pm

#1

sadie06

Closed Accounts Posts: 1,706 ✭✭✭

Join Date: December 2005

Posts: 1633

I have more or less been diagnosed with this condition, and even though a lot of literature classes it as a rare disorder (roughly 1 in 100,000) it is thought to be under diagnosed, and could be as prevalent as 1 in 5,000.

Given this, I was astounded at the lack of knowledge by all health care professionals (with the exception of neurologists) of the condition, and my search for information has prompted me to start this thread so that the next boardsie who enters a search can be pointed quickly in the right direction.

Useful sites:

http://www.hnpp.org/

http://www.hnpp.info/

Slightly more tech/medical site:

http://www.medmerits.com/index.php/article/hereditary_neuropathy_with_predisposition_to_pressure_palsy

Most useful of all to me has been this yahoo group: http://health.groups.yahoo.com/group/hnpp/

There is a wealth of information being exchanged by about 250 members worldwide. I found that symptoms I have which are not mentioned in the standard literature are common to the disorder, and it put my mind firmly at ease that my neuro is on the right track. I also had contact from a lovely Irish member who is being extremely helpful.

I hope to add to this as I get my head around managing this condition, and don't expect any replies, but obviously if anyone in need of info comes across this thread, don't hesitate to contact me.

:-)

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