A small, but growing, group of us have started an e-mail support group. We are people who have HNPP. We share and compare the daily struggles of living with HNPP, and other aspects of our lives.
If you would like to join the group, please contact Dan Page, our resident computer guru and list owner. Dan will tell you how to sign upand give you an option of joining a joke group as well.
These are comments made by group members:
I hope you find our group informative, supportive and entertaining. I don't think any of us would have ever known so much about HNPP had it not been for each other. We compare our doctors and we help each other with sympathy for our symptoms. Our symptoms are wide, many and varied. We support each other through thick and thin. We are a real family.
This group begins to feel like family after awhile. In fact they often understand better than your loved ones do.
Thanks for all the support you've been giving me. I never imagined that joining a group like this would help so much in accepting everything.
Last updated: 1/00
Home / What is HNPP? / Other names for HNPP / Varieties of HNPP / HNPP Symptoms / The Genetics of HNPP / Number of People affected / Getting Diagnosed / The Genetic Test / Progression / HNPP Articles and Other Links of Interest / Other Organizations supporting HNPP / Q and A/FAQs / Prevention is key / Conservative management of HNPP / Toxic drug List / Surgery and HNPP / Letter to Surgical Team / Helpful hints by and for people with HNPP / People Say this works for them / Join HNPP e-mail support group / Life with HNPP / Survey of individuals with HNPP / Personal Stories / Significant HNPP Symptoms / Pain / Learning to Pace Activity / Adapting the house, etc / Equipment fundiing / Doctors who treat HNPP / HNPP Researchers / HNPP Experts / Research Studies / Disability and ADA / People First language / Tax Deductions / Glossary / Contact Maureen