"THE LOVE OF FAMILY AND FRIENDS IS THE GREATEST HEALING THERAPY OF ALL."


General information and searchable libraries of medical information

The U.S. National Library of Medicine (part of the National Institutes for Health,
the NIH) has an excellent online library with health news, general information, and
information on a wide variety of medical conditions, from the very common to the
extremely rare. Note that their website has Medline Plus, designed for the general
public, and a section for healthcare professionals. Medline Plus includes information
in English and Spanish. It also includes videos and other materials for some
conditions.

The National Center for Complementary and Alternative Medicine (another part of the
NIH) also includes news and health information. This site is ideal for people interested
in topics outside standard Western medicine, such as herbal remedies, therapeutic
exercises such as tai chi and yoga, 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 credible.
Information is in English and Spanish.

Heart disease and stroke/ Diabetes/ Cancer

The three most common causes of death in the U.S. and most developed countries are heart disease and stroke, diabetes (type 1 and type 2 combined), and cancer.

Blood clots in arteries (the vessels that feed all organs, including the heart and brain)
cause heart attacks and strokes when they block vessels that are often already narrowed
by disease. In heart attack (formally called myocardial infarction) and clot-related
stroke, cells die because they are deprived of oxygen too long.

One reason it is so important to identify arterial disease early is that treatment of risk
factors, such as high blood pressure and diabetes, can delay or prevent life-threatening
heart attacks and strokes. Even if disease is not found beforehand, the quicker treatment
begins for heart attack or stroke, the better the outcome because permanent damage is
prevented or minimized.

There are two general types of diabetes mellitus (“sugar” diabetes), Type 1 and Type 2
disease. Type 1 diabetes is commonly called juvenile or (childhood-onset) or
insulin-dependent diabetes; most people are diagnosed as children or young adults.
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 2 diabetes, often called adult-onset or non-insulin-dependent diabetes,
commonly develops in adults and usually does not require insulin, at least at first.
Type 2 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 effectively. Type 2 diabetes is a major health concern in many countries, in part
because obesity is a major risk factor. It is becoming more common in teenagers and
children, especially in those who are overweight or obese.

Cancer is a general term used to describe a large number of diseases marked by
tumors that spread to nearby, healthy tissue or to distant places in the body. There is
a smaller group of cancers that are marked by abnormal growth and behavior of blood
cells (this second group includes all types of leukemia and lymphoma).

Some cancer cells grow and divide rapidly; in other cancers, the malignant cells grow
slowly. All cancers are marked by changes in their genes (the hereditary blueprint for
cell appearance and function) such that cancerous cells no longer respond to signals to
stop growing: In other words, cancer cells no longer respond to the chemicals that put
the brakes on growth and division of normal cells.

It is always important to diagnose and treat cancer as soon as possible, but patients with
less aggressive cancers (types that progress more slowly) may require less intensive
therapy and may find their disease is more easily cured.

Always take cancer seriously. It is vital to get a clear diagnosis if at all possible so
decisions can be made and appropriate treatment, whatever it is, can begin as soon as
possible.

It is also true that many people with cancer are at higher risk to develop another form
of cancer later in life. Some people are born with higher risk for the disease, in general.
For others, therapies that suppress or cure one cancer can increase risk for a different
form of cancer later in life.

Neuro-Psychiatric Disorders: Devastating, but sometimes nearly invisible

Whether signs of illness are in functions we consider mental (including thought,
emotion, attention and behavior, and memory) or in functions broadly associated with
the rest of the body (such as posture and the ability to move or move only when desired
and in the way we want), many conditions develop when cells in one or more parts of
the brain, spinal cord, or both function abnormally or die.

I’ve divided the list of neuro-psychiatric conditions by primary type of problem
apparent to the patient, parent, or doctor. First we’ll discuss disorders that are primarily
psychiatric, that is, those that affect mental function.

Behavioral disorders: Autism, Autism Spectrum Disorder, and Pervasive Developmental
Disorder (overlapping terms used somewhat differently by medical doctors,
psychologists, and educators)

Unlike heart disease, stroke, cancer, and diabetes, autism cannot be diagnosed
definitively with any test. In fact, it almost certainly is not one disorder, but rather
different conditions that are sufficiently alike to the eye that they have been lumped
together descriptively under the umbrella terms autism spectrum disorder and pervasive
developmental disorder.

Research may tease apart specific disorders with identifiable causes that respond
predictably to specific treatments, but that day is not yet here. Genetic findings
associated with certain small percentages of patients have been published, and more
research will undoubtedly be published. The results of this and other work for
individual children, adults and families will take longer to establish.

If you check in Resources, you will see that the list of organizations devoted to these
conditions is increasing. Families are far more likely to find information and support
than they could even five to ten years ago. You will find a variety of opinions on the
disorders themselves, as well as approach to treatment. Read a lot, talk to healthcare
providers, educators, and families who may face similar or different challenges, and
consider the specifics of your child or other affected loved one when making decisions.

Remember that if you make the best decision you can with what you know at the time,
you have done your best. No one can ask more than that. Also remember that few
decisions are irreversible. If something doesn’t work over time, consider adding or
dropping a therapy or changing things up. Always trust your instincts regarding the
uniqueness of your loved one and his or her circumstances.

Information on Attention Deficit Disorder and Attention Deficit Hyperactivity
Disorder (ADD and ADHD)

These conditions affect behavior and are also diagnosed based on skilled observation
and description of symptoms, rather than a test. As with the autism spectrum disorders,
diagnosis is often made in childhood, but the condition probably persists to some degree
for the entire lifespan.

Information on mood and thought disorders

Information on disorders primarily affecting mood (such as depression and bipolar
disorder) and thought (such as schizophrenia) can be found at the general medical
library sites by searching on the condition of interest or through psychology and
psychiatry organizations. A variety of information and support organizations are listed
in Resources.

The more we learn, the more we understand that both normal thought and moods – as
well as disorders affecting primarily thought, mood or both – are based on the
chemistry within our brains and bodies. Despite that growing knowledge and the
courage of increasing numbers of people who publicly acknowledge their own illness
or that of a loved one, there is still tremendous stigma attached to mental illness.

I have had major depression in the past, my son has a variation of bipolar disorder, and
other loved ones in my family and in my husband’s have also had mood disorders.
I have had many friends similarly affected, and I am acquainted with two families who
quietly but openly live with schizophrenia in one or more family member.

NARSAD, originally founded as the National Alliance for research on Schizophrenia
and Depression, is now known simply as NARSAD in recognition of its research
spending in most areas of neuro-psychiatric research. This organization 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.

On its website, you can find factual information about a wide variety of mental health
disorders affecting children and adults, as well as news items on international research
and public policy (latter, primarily American).

Information on dementias (disorders that first affect mental functions, including
memory and judgment but often later involve 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 probably the most well
known. The Alzheimer Association’s website has comprehensive sections for families,
healthcare professionals, and researchers.

Information is available in English and Spanish, as well as other languages including
German, French, Italian, Arabic, and a number of Asian languages. It is also interactive,
with message boards and other ways for visitors to communicate with other people and
families affected by the disorder.

Information on brain injury

Brain injury is one of the most common serious, chronic conditions in the U.S. and
other developed countries, but it is uncommonly discussed because there are so many
types of brain injuries and they affect everyone from newborns to the elderly.

Examples include brain injury after stroke, brain injury after physical trauma such as
sports and automobile accidents, brain injury associated with tumor or other brain
disease, brain injury due to drug overdose or other chemical injury, and brain injury
before birth, to name just a few.

Information on seizure disorders/ epilepsy

As with brain injuries, seizure disorders are common and very diverse in their causes,
nature and severity. They can develop at any age from newborn to elderly, due to
known causes or due to a cause that is never clear.

There are many different types of seizures, including the generalized, convulsive
seizures with which many people have some familiarity. However, a large percentage
of people, including some healthcare providers, do not know that these generalized,
tonic-clonic seizures are not the most common to occur in people with epilepsy, the
umbrella term for disorders characterized by a tendency to seize.

Although all seizures start when a cluster of cells begin to fire electrically when they
should not, triggers for seizures vary (in my case, low blood sugar will trigger one,
and sleep deprivation makes many people with epilepsy more likely to have a seizure),
and the visible presentation of different seizure types varies widely. In fact, in some
cases the entire difference between the person the moment before he seizes and his
appearance during a seizure is the stopping of ongoing activity and lack of blink reflex
for a second or so during the seizure.

Using the Internet to find useful medical information

I. Finding information sites.

Try entering your disease name into a search engine along with the terms society,
foundation, or association (or the non-English equivalents).  If you are in the U.S.,
try American X disorder foundation; in the U.K. or some other countries, Royal X
disorder foundation may work.

In many larger countries, there are different suffixes available for Internet domain
names. For instance, .org typically is associated with nonprofit organizations, while
.edu identifies educational institutions. Domain names with .co or .com are generally
commercial, that is, they are associated with money-making businesses. Commercial
sites associated with a new drug, for example, may have valid, helpful information.
You just need to remember the site was founded and funded to help sell a product.

II. Evaluating a website.

Note the website address (with suffix, if there is one). Read the home page for
information about the individual or group behind the site: Pages with names including
“About us,” “History,” and “Mission” may be useful in identifying organizations with
legal nonprofit status from ones that hope to sell something.

Physician or other healthcare provider groups are generally clear on the home page that
they represent a certain group of specialists. Often these organizations have words such
as
college in their names to set them apart from patient-led organizations
These sites may still be helpful; see if there are sections for patients.

The more information you have about an organization, the more you know about the
people involved with it, the readers the site hopes to attract, sometimes even the
approach taken to a health disorder or treatment (health information, advocacy for a
particular treatment or healthcare provider, support for affected individuals and
families, or more than one of the above).

Look at specific content. Do articles have an author listed? Many nonprofit
organizations do not list an individual author for each article, but they do state that
all material is evaluated by one or more members of the editorial board, board of
directors, or board of medical advisors. Check the appropriate page to see the names,
affiliations, and backgrounds of these experts.

Instead of an author, organizations are sometimes listed as the source of material:
“per the American Cancer Society,” “2008 National Statistics, U.S. Centers for Disease
Control,” or “article by Millet and colleagues, September 2010 issue of the American
College of Cardiology.”

If the date of particular research is not given, is there a date given for the last time the
content was updated?

If the information in an article is beyond the level of basic fact, there should usually
be information on source and date.

If there is no author, no source, and no date, it is less likely a doctor will consider the
material worthwhile.

III. 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/webeval.html

You may want to watch it for their ideas on how to use the Internet most effectively.


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