← Return to Hereditary Neuropathy with liability to pressure palsies

Discussion

Hereditary Neuropathy with liability to pressure palsies

Neuropathy | Last Active: Feb 12 8:29am | Replies (9)
Comment receiving replies
@fordsy

I am so sorry you both are challenged by HNPP plus other issues. I appreciate your sharing all this information. I will share this with my daughter who just said last night she wishes she had someone to communicate with who is dealing with this. I am new to this site. Is there a way to message off here?
I also plan on being tested. I have had the diagnosis of Chronic Peripheral Neuropathy for 30 years.
Thank you again for your thoughtful information.

Jump to this post

Replies to "I am so sorry you both are challenged by HNPP plus other issues. I appreciate your..."
Zebra | @californiazebra | Jan 18 11:53am

It sounds as though you may have HNPP too. The mutation can be de novo (new) in the family for someone. I seem to be the first one to have it.

I will send you a private message with my personal email address so we can communicate outside this platform. Once on personal email, I can give you my phone number if you want to chat.

Look for a message on the envelope icon rather than the bell in the top right corner. For some reason I only see that on my computer not my phone.

VIEW AND REPLY