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Knowledge is Power:
How to Use this Website
Here are some
suggestions for how you can best approach your search
for answers and alternatives to your diagnosis and
treatments, and how to use this site:
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1. |
Get organized.
You may want to keep a notebook to log all
the information you obtain. One tool you might want
to use is located here at diagKNOWsis.
It's a chart you can use to keep track of
your research. (Link
here for the Research Organization Chart.) |
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2. |
Find a physician who
will partner with you in your
pursuit of information. Too many
doctors want to dictate to you instead of
working hand-in-hand with you to patiently
answer your questions or explain how your
research findings can, or cannot, help you.
The minute a doctor seems impatient with
your questions, it's time to find a new
doctor-partner.
Learn more about working with
professionals(s) here. |
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3. |
Plan
to get at least one
second opinion and possibly a
third. You may have to work with a
handful of professionals before you get the
answers most relevant to your situation.
Learn more about working with
professionals(s) here. |
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4. |
Request copies of your
records from the physician(s) who
are treating you. They are required,
by law, to provide them to you upon request.
Learn how to
read them. |
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5. |
Research, research, research. Once you
begin to gather information, you can look up
diagnoses, test results, medical terms,
symptoms, possible treatments and combinations to learn more.
The Research Organization Chart (see bar at
right) can help you. But a caveat:
don't believe everything you read!
Look for confirmations of any piece of
information, and plan to discuss your
findings with
your physician.
Learn more about research here. |
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6. |
Enlist an advocate.
Ask a friend or loved one to help you
research, and to meet with the professionals
who will treat you and monitor your
progress. |
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7. |
Network -- it's
crucial. Share your knowledge and
diagnosis with everyone -- you'll be
surprised at who can help you. You can
learn more about
networking here. |
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8. |
Learn to
trust your
instincts, but
be realistic. Don't confuse your
instincts
with wishful thinking. And don't let
denial get the better of you. Facing
your fears, and empowering yourself with
more information, will be much better for
your health. As you do your research,
you'll find that the more you feel
empowered, the more confident you will feel
about your treatment options.
But
remember to be
realistic.
No doctor can know everything there is about
every disease or condition. On the
other hand, some doctors are more current in
their knowledge, and some doctors just
profess to be. As long as you have
found professionals to partner with you (as
in #2 above) then the two of you will
discover the best options for your
situation. |
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9. |
Don't give up.
New research becomes available everyday.
If you are struggling for answers, keep
looking, even at some of the same
information you've researched before. We add
resources to this site as they become
available. Sign up to be
notified. |
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10. |
Help others.
Become involved in support groups through
local organizations, and through the web. Donate
to the organizations that research
improvements and cures for your disease or
condition.
Searches on the web will yield all kinds of
groups that focus on one disease or
condition, no matter how rare or obscure.
Helping others will also help your emotional
adjustment and will empower you emotionally
to deal with your condition. |
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We wish you the best with
your research.
Please share your success.
Why not send us
an email?
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