HNPP
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for patients, medical professionals and researchers

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This website is to inform patients, medical professionals and researchers. Before you continue, please read the medical disclaimer.
In case you have any questions, please contact us through the contact form.

HNPP - Hereditary Neuropathy with liability to Pressure Palsies

Hereditary neuropathy with liability to pressure palsies (HNPP) is a genetic disorder of the peripheral nervous system, causing the nerves to be increasingly sensitive to pressure, injury or repetitive use.

HNPP causes episodes of numbness, tingling and/or weakness in response to nerve injury from pressure, stretching or repetitive use. Things that cause these symptoms usually would not affect a normal individual. When injured, the nerves demyelinate or lose their protective covering. This demyelination is what causes the episodes of numbness and weakness in the injured area. The numbness and weakness is referred to as a ‘pressure palsy'. In time, the nerves recover, or partially recover and remyelinate. (source: hnpp.org)

The onset of HNPP is usually during adolescence or young adulthood, but it can start at any age, either in early childhood or later in life. While exceptions do occur, the majority of patients with HNPP develop initial symptoms around the first or second decade of their life. 

Advice

Children and HNPP

Research & sources

Online community: Stuffthatworks

Online survey with statistics! StuffThatWorks

Fill in the questionnaire and help the HNPP community to get more insights.
We have following information among participating members (400 contributors):
-  Initial insights
-  Most tried treatments

When having  100 more members, we will get insight in 'Most effective treatments'. You can post anonymously. 

Latest news

Dr Jun Li: Video conference:
22nd of March 2024

There will be a video conference from doctor Jun Li on March 22nd and everyone can attend.

The link to the web conference will be posted on the different Facebook pages (HNPP, CMT AND HMSN SUPPORT, HNPP Help ...). Questions that you have for doctor Li, can be sent by email to his assistant Stephanie: sxuan@houstonmethodist.org

Meeting information: Friday March 22nd at 3:00 PM Central / 4:00 PM Eastern / 1:00 PM Pacific.

There has been a Zoom link for the call below for 3 PM central time on March 22. For those that are international who will join us, the time zone for the conference is UTC-5:00. You may need to adjust your local time to one hour AHEAD due to US daylight savings time.

Meeting URL:

Friday March 22, 3pm UTC-5:00

https://houstonmethodist.zoom.us/j/95775380476...

Meeting ID:

957 7538 0476

Passcode:

758011


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Contact info (in progress)