Patient Advisors: The Who, What and Why?

A patient advisor is someone who has peripheral neuropathy and is committed to finding help for themselves and others who suffer from neuropathy. We have heard from some of the interested patient advisors and they are listed on this web site.

Patient advisors come in all ages, sizes, with all types of neuropathy. Beyond their neuropathy, they have vast levels of experience and skills in many fields of endeavor. Advisors come from every profession, homemaker, teacher, medical professional, roofer, driver, military veteran, technicians in all fields, engineer, writer, service industry worker, public and private worker and business people involved in every job or position known to mankind. Many have lost their life’s work to neuropathies devastation on their bodies. They struggle not only against the disease, but against poor public attitudes, against even a few self empowered neuropathy leaders who attempt to silence them, making them second class citizens to the medical community or ignore them altogether. These patients struggle against the lack of diagnostic equipment, research, and treatment options with extremely limited clinical training in neuropathy within the medical field. Their commitment to lifelong learning prepares them to challenge snake oil cures and over exaggerated claims by others.

Patient Advisors commit to learning about neuropathy from reliable sources such as Dr. Norman Latov MD Neurologist, Writer/Patient Mims Cushing, Dr. Scott Berman MD, Psychiatrist/Neuropathy Patient and Writer/Patient Sara Manguso, referring other patients to these sources of hope and trusted information, feeding the partnership between the health care professional and neuropathy patient.

Patient Advisors are the energy that will drive the neuropathy community forward and challenge the status quo beyond the past assumptions and opinions about neuropathy and neuropathy patients. Without active involvement and respect for the patient no organization will be effective in any attempt to meet the neuropathy mission. Any attempt to ignore, fail to respond to, silence or make them second class citizens of the cause will fail. Patient Advisors are the leaders who are committed to helping others, who suffer with the challenges of Peripheral Neuropathy, yet reach out beyond their own needs to help others. Such was my hero, the late Mary Ann Donovan, co-founder of The Neuropathy Association Inc.

The task of a Patient Advisor is determined by each individual adjusting to the limits of energy, time, skills and interests. Having learned that doing something is better than doing nothing, they jump in to help. They may refer patients to the books or valued articles on neuropathy or books on coping that are now available including the DVD. While working to share practical solutions for symptoms at every opportunity, they always encourage the patient to work with their own treating physician or health care worker. They are committed to getting information to other patients. They share information with patients via phone, internet, and mail or in casual personal contacts and some are support group leaders. They prepare mailings, refer or write letters to patients, may lead a support group, help with a support group or commit to taking neuropathy brochures to the offices within the medical community, operate stands at medical fairs, work with local newspapers on PR, or even operate a web site.

Patient Advisors and others review the content of this web site, sharing comments, providing input on effective ideas, activities, meetings, and submit good articles, while referring other patients to the site for help, working to make this web site and their web sites of greater value to the neuropathy community.

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