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I have HNPP
Cazann
Posts: 85Member Courageous
Thank you for the wecome.
Hi I was reading some of the comments on here and was interested in one from someone who has HNPP. I have this rare disease and found lots of info on a Facebook forum. I hope that this will help.
Hi I was reading some of the comments on here and was interested in one from someone who has HNPP. I have this rare disease and found lots of info on a Facebook forum. I hope that this will help.
Replies
Do you want to share the link to the facebook forum so others can take a look?
Senior online community officer
Hi All
I don't know the Facebook forum but for credible information about HNPP (Hereditary Neuropathy with Pressure Palsies ) I would recommend the NHS website:
https://www.nhs.uk/conditions/hereditary-neuropathy/
Hope this helps
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist
The Facebook forum is called, HNPP and CMT/NEUROPATHY SUPPORT
I didn't find the NHS wbsite very informative. Typing in HNPP on the web will help to find many websites that give you information. Including a BBC article from 2011. This article was HNPP at the extreme!
If you cannot get the information from your doctor because many of them haven't even heard of it. Then checking the net is the best way.
Thanks
Cazann