About the site:
This site was originally developed in April of 1998, by Maureen Horton. It is not an organization (hnppp.com was taken).
About funding and advertising
Maureen pays for the cost of maintiaining the website herself. No advertising is accepted . The site does not host or receive funding from advertising or from the display of commercial content.
Links are made to other websites :
to support information provided on a page
to other sources of information I have discoered from my own research
to other individuals specifically in the hnpp community, rovided they do not accept advertising.
Links are not made in any exchange system, where I will list your site if you list mine. I will look at others links and if I find they are applicable to the HNPP community, I will add them here.
Occassionaly a product will be mentioned by an individual in the helpful hints section. Maureen may mention a product in giving an example of a useful product. If she finds a particular product useful, her findind will be lcearly stated as her opinion.
Drugs may be mentioned by brand name, soley for clarity.
About Maureen Horton
Maureen Horton is a registered nurse in the state of Minnesota (USA). She has HNPP herself. She was diagnosed in 1985, after some 8-10 years of symptoms, by a neurologist who just happened to see it during his fellowship. At the time, it was thought that there were only 30 families worldwide with the disease. She was given two medical journal articles on "familial pressure sensitive neuropathy" , and told to not cross her legs or lean on her elbows. The neurologist had no more to offer her. With no where to turn to for the detailed information about this disease, that she so wanted, Maureen started to pay very close attention to how the disease affected her. Much of it was by trial and error. She learned that by avoiding or redusisng time spent in activities that caused pressure palsies, she was able to lead a fairly normal life.
Maureen has bachelors degree in nursing. Her nursing career included coronary care, emergency room and a medical surgical unit at local hospitals. Consulting with physicains, she rewrote all the patient teaching handouts on her med-surg unit. She worked on her hospital's documentation committee for 2+/- days a week for 5 years and was the principle author of the training manual for the new documentaion. She gave multiple inservices to teach the new documentation system to other nurses. And she taught the use of the hospital's computer system to newly hired nursing staff.
She met began writing patient teasing handouts
She had to educate her doctors instead of them educating her.