PATIENT
ADVISORS: The WHAT, WHO 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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