- Hereditary Neuropathy with liability to Pressure Palsies or HNPP is a slowly progressive, hereditary, neuromuscular disorder which makes an individual very susceptible to nerve injury from pressure, stretch or repetitive use. When injured, the nerves demyelinate or lose their insulating covering. This causes episodes of numbness and weakness in the injured area, which are referred to as the pressure palsies'. These episodes can be mild and more of a nuisance than anything, or so severe almost all movement in the affected limb is impossible. They may last several minutes to months. Because the symptoms can come and go, and most neurologists have not yet heard of or seen a case of HNPP, it can be very difficult and lengthy process to be diagnosed.
This site was developed as a resource for people with HNPP, their families, and their caregivers who may want to learn more about this unusual disease. My hope is that this site will continue to be under constant renovation, as we gather more information about HNPP either anecdotally or through research. Individuals with HNPP and/or their family members are encouraged to write in and share their stories, their helpful hints or comments. I also encourage the health care providers to share what they can, write an article or in any way contribute. I am open to new ideas for the site and any suggestions for change or corrections.
The information provided on HNPP.org is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her health professional.
A word of CAUTION: As one physician wrote, "It is hard to achieve the right balance between acknowledging the very real problems experienced by some people and yet not scaring the mildly affected individuals unnecessarily." This site is trying to cover the entire range of problems experienced by people with HNPP. That means the most mild to the most severe. For 80-90% of people with HNPP, this is a nuisance disease. Small, though possibly frequent, adjustments to the way you live can prevent pressure palsies and life can go on normally. For a minority of individuals with HNPP, the disease can be severe enough to be disabling. So take what you need from here. If your symptoms are mild, read about how to avoid pressure palsies and count your blessings. If your symptoms are more severe, know that you are not alone and that there are things that can be done to make your life easier.
Maureen Horton, RN and person with HNPP
- Last updated 3/08, Last reviewed 3/08