for specific chronic or serious diseases. Some offer information in other languages, and
this is noted where applicable.
I selected the most common chronic/serious diseases in developed countries, heart
disease and stroke, cancer, and diabetes, as well as a number of neurological and
psychiatric disorders that collectively account for a very large number of affected
people and families.
I checked all the addresses and sites when I wrote this section and I periodically check
them, but let me know if any links no longer work. Please note that Healing Woman
does not control the content on any website beyond our own and we are not responsible
for the accuracy or currency of information on other sites [read more].
More detailed information on the same medical conditions and how to search the
Internet and use downloaded material in conversations with doctors and other health-
care providers is included in Food for the Mind.
The full context for learning and understanding medical information, and then deciding
how you want to apply it to your health care and your life is patient advocacy, and it is
the subject of Food for the Smart Patient.
up websites, that they present themselves honestly, or that their information is sound or
updated.
USING INTERNET INFORMATION
If you think the website may be valuable to you, bookmark it so you can find it again.
If you download any pages of information, make sure the website and date are printed
on the page; if not, write the website or organization name on the page and the date you
downloaded the information. This will make it easier when you share the information
with your healthcare providers. They will immediately be able to read the page and see
the information, the source, and the date.
If the site is not based in your country and this is not clear on the printed page, write
the country of origin on the sheet. There is a good reason for this. Medical care differs
in different countries. This is not just a matter of who pays for care but what care is
approved for a given condition and whether doctors tend to prefer one approached
approach to another.
I can give an example. Hyperthyroidism is the condition caused by too much thyroid
hormone in the blood. For a long time, radioactive iodine has been the preference of
many doctors in the U.S., whereas medication has been the first choice in Europe and
Japan. Both approaches work. Radioactive iodine can cure; a dose is given that destroys
enough overactive thyroid tissue that hormone levels are brought permanently down to
a normal level. Antithyroid drugs block production of thyroid hormone, which means
this approach is not curative but can be altered with time. The tissue death caused by
radiation is not reversible.
Both approaches are good, and in some cases (such as patients who will probably be
poor at taking medication for the rest of their lives) one approach may clearly be better.
Such differences in parts of the world, or differences among doctors within the same
country, do not necessarily mean one group is right and another wrong.
It simply means there are differences.
You should always feel comfortable introducing information for discussion and having
your doctor respond to it. In return, you owe it to your doctor to listen to his or her
reasons for the preference for your particular case. If you have a strong feeling about
approach, for instance, that you dread radiation, be clear about that at the beginning of
a decision-making discussion.
The best discussions share some elements: All of the information is clearly understood
by doctor and patient (or parent of a small child), the conversation is positive, centered
on the patient’s best interest, and everyone in the room realizes they are on the same
team.
Other ways to represent yourself as well as possible are discussed in “Food for Smart
Patients,” the section dedicated to patient advocacy within the medical system.
The U.S. National Library of Medicine has a tutorial on using the Internet at
http://www.nlm.nih.gov/medlineplus/webeval.html
You may want to watch it for their ideas on how to use the Internet most effectively.
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ONLINE RESOURCES FOR INFORMATION:
A sampling of good sites General medical information and information on just
about every condition, common or extremely rare, that you might want to learn
about.
U.S. National Library of Medicine (NIH)
Home page is
http://www.nlm.nih.gov/
For Medline Plus, which is designed for the general public, go to
http://www.nlm.nih.gov/portals/public.html
Medline Plus includes information in English and Spanish.
____________________________________________________________________
INFORMATION ON COMPLIMENTARY AND ALTERNATIVE MEDICINE
National Center for Complimentary Medicine,
part of the U.S. NIH
Home page is
http://nccam.nih.gov
This is the site for people interested in topics outside standard Western medicine, such
as herbal remedies, therapeutic excerises such as tai chi, and dietary supplements.
The information is clear and written by experts on the subject. This is a great place to
find information that you can use with a "mainstream" doctor because they will accept
the source as believable.
Information is available in English, Spanish.
____________________________________________________________________
INFORMATION ON HEART DISEASE AND/OR STROKE
The American Heart Association,
a major patient-led organization
Home page is
http://www.heart.org/HEARTORG/
Information specifically includes heart attacks and strokes
Information is available in English, Spanish, and several Asian languages.
Telephone numbers for help are given for English and Spanish.
The Heart Rhythm Society
Home page is
http://www.hrsonline.org/
This organization represents doctors who specialize in heart problems due to abnormal
rhythms. Click on “Patient Information” on the home page or go directly to
http://www.hrsonline.org/PatientInfo
____________________________________________________________________
INFORMATION ON CANCER
The American Cancer Society,
a major patient-led organization
Home page is
http://www.cancer.org/
All cancers are covered.
Information is available in English, Spanish, and several Asian languages.
The Leukemia and Lymphoma Society,
a patient-led organization
Home page is
http://www.leukemia-lymphoma.org/hm_lls
This organization focuses on cancers of blood cells, including multiple myeloma
and Hodgkin’s disease.
Information and telephone numbers are given for English and Spanish.
____________________________________________________________________
INFORMATION ON DIABETES
There are two forms of diabetes mellitus (“sugar” diabetes), Type I and Type II
disease. Type I disease is called childhood-onset or insulin-dependent diabetes; most
patients are diagnosed as children or young adults and they are dependent on insulin
because the cells that make insulin (the chemical that helps all body cells take sugar
in from the bloodstream) are destroyed by the disease process.
In contrast, Type II disease, called adult-onset or non-insulin-dependent diabetes,
commonly develops in adults and usually does not require insulin, at least at first.
Type II disease develops when the body does not produce enough insulin for proper
function or body cells become resistant to insulin, which means they cannot respond
to it normally.
American Diabetes Association,
a major patient-led organization
Home page is
http://www.diabetes.org/
Information is available in English and Spanish.
Juvenile Diabetes Research Foundation International,
a major patient-led organization
Home page is
http://www.jdrf.org/
This organization has historically been the leader in research and public awareness
of type I disease.
I could not identify a way to access information in any language other than English
____________________________________________________________________
SPECTRUM DISORDER, AND PERVASIVE DEVELOPMENTAL DELAY
(Overlapping terms used somewhat differently by medical doctors, psychologists,
and educators)
The Medline Plus
Discussion of autism (along with links, including some for more information,
related conditions, treatments, and support organizations) is online at
http://www.nlm.nih.gov/medlineplus/ency/article/001526.html
Within the U.S. National Institutes of Health,
autism spectrum disorders (the develop- mental delay disorders) fall under the
National Institute of Mental Health (NIMH).
Its section for the public features factual information, news, and links to outreach
organizations:
The page is
http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-
developmental-disorders/index.shtml
At least some information is available in Spanish, as well as English.
The Medline Plus
page on resources for families features both physician-and patient- and family-led
organizations.
The list is available at
http://www.nlm.nih.gov/medlineplus/ency/article/002163.html
At least some information is available in Spanish, as well as English.
____________________________________________________________________
INFORMATION ON ATTENTION DEFICIT DISORDER AND ATTENTION
DEFICIT HYPERACTIVITY DISORDER (ADD AND ADHD)
The National Institute of Mental Health
discussion of ADHD, including information, news updates, and links to services and
support organizations, is available at
http://www.nimh.nih.gov/health/topics/attention-deficit-hyperactivity-disorder-
adhd/index.shtml
____________________________________________________________________
INFORMATION ON BEHAVIORAL CONDITIONS
Is also available from physician organizations.
Check the website of the
American Academy of Child and Adolescent Psychiatry
http://www.aacap.org
Click on “for Families” at the top of the home page or go directly to
http://www.aacap.org/cs/forFamilies
Also look for information from the
American Academy of Pediatrics
Home page
http://www.aap.org/
Click at the top for either “Parenting Corner” or “Health Topics.”
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INFORMATION ON MOOD AND THOUGHT DISORDERS
Information on the disorders primarily affecting mood (such as depression and
bipolar disorder) and thought (such as schizophrenia) can be found at the government
sites by searching on the term of interest or through organizations.
The website of the
American Academy of Child and Adolescent Psychiatry,
the organization for psychiatrists who specialize in treating children and young adults,
is found at
http://www.aacap.org
Click on “for Families” at the top of the home page or go directly to
http://www.aacap.org/cs/forFamilies
The glossary of 17 conditions affecting teenagers is easy to read and much of the
information applies to adults as well as teens.
NARSAD was formed by three leading U.S. mental health organizations:
National Alliance for the Mentally Ill, National Mental Health Association
and National Depressive and Manic Depressive Association.
Home page is
http://www.narsad.org/index.php
and you can find factual information about a wide variety of mental health disorders
affecting children and adults.
____________________________________________________________________
INFORMATION ON DEMENTIAS
(disorders affecting mental functions including memory and judgment that often
eventually involve nerves responsible for other body functions, too)
In addition to the government sites, there are some condition-specific organizations.
Alzheimer’s disease is not the only form of dementia, but it is the best known.
The Alzheimer Association,
a family-led organization
Home page is at
http://www.alz.org/index.asp
Information is available in English and Spanish, as well as other languages including
German, French, Italian, Arabic, and a number of Asian languages.
____________________________________________________________________
INFORMATION ON BRAIN INJURY
The Brain Injury Association of America,
a patient- and family-led organization
Home page is
http://www.biausa.org/
There is a directory of branches in different states, along with contact information.
____________________________________________________________________
INFORMATION ON SEIZURE DISORDERS/ EPILEPSY
The Epilepsy Foundation of America,
a patient- and family-led organization
Home page is
http://www.epilepsyfoundation.org/
Information is available in English and Spanish.
____________________________________________________________________
A SAMPLING OF GRIEF ORGANIZATIONS INCLUDES THE FOLLOWING
is devoted to helping families who have lost a child of any age and from any cause.
This U.S.-based organization has a website with contact information in English and
Spanish at
http://www.compassionatefriends.org/home.aspx
For TCF chapters in other countries, including Australia, Canada, the U.K.,
and Germany, see their home page at
http://www.compassionatefriends.org/resources/international_support.aspx
______________________________________________________________________
The Violent Death Bereavement Society,
their home page is
http://www.vdbs.org
/is U.S.-based but also active in the Middle East. Its website has a list of resources
including books and special-topic organizations such as groups dedicated to helping
people with post-traumatic stress disorder.
Griefnet is an online organization with resources for adults and children.
The website includes a resource page for people who lose a friend or loved one to
suicide. The resource list is available at
http://www.griefnet.org/resources/suicide.html
______________________________________________________________________
The U.S.-based Association for Pet Loss and Bereavement has an interactive
website that includes a chatroom, materials for children, and instructions on how to
set up a pet bereavement group.
Their home page is at
http://aplb.org/index.html
______________________________________________________________________
One organization I found online is small (and local to Washington, D.C., U.S.A.)
but has a wonderful resource list for deaths due to specific causes such as cancer,
AIDS, Sudden Infant Death Syndrome, or murder and deaths in specific professions
such as the armed forces, policemen or firefighters. They also identify groups that
support people after the death of a parent, partner/spouse, or child.
The Wendt Center for Healing
page of resources available online is available at
http://www.wendtcenter.org/resources2/on-the-web.html
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