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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary


This Glossary contains some words or phrases that are common to an experience of a life changing diagnosis.

For a glossary of words relating to:

AIDS

AIDS stands for Acquired Immunodeficiency Syndrome.

  • Acquired means that the disease is not hereditary but develops after birth from contact with a disease causing agent (in this case, HIV).
  • Immunodeficiency means that the disease is characterized by a weakening of the immune system.
  • Syndrome refers to a group of symptoms that collectively indicate or characterize a disease. In the case of AIDS this can include the development of certain infections and/or cancers, as well as a decrease in the number of certain cells in a person's immune system.

AIDS is a progression of HIV disease. For the stages of HIV disease, see: http://www.sfaf.org/aids101/hiv_disease.html offsite link


 

For information on how HIV damages the immune system, see: http://www.sfaf.org/aids101/virology.html offsite link

If you do medical research and read grim facts, keep in mind that: 

  • Statistical information about HIV disease is most likely out of date thanks to ongoing medical advances, including what are known as salvage therapies (therapies to use when first line therapies don't work). 
  • By their nature, statistics only provide a general guide so you can prepare in case the "what ifs" occur. Statistics do not predict what will happen to any individual. .
  • Doing medical research can provoke anxiety and possibly even depression.

Expect to hear lots of advice and stories from friends. Keep in mind that information about what happened to other people is "anecdotal." It is not scientific. What happens to other people is frequently irrelevant to your own experience.

HIV

HIV stands for:
  • Human because this virus can only infect human beings.
  • Immuno-deficiency because the effect of the virus is to create a deficiency, a failure to work properly, within the body's immune system.
  • Virus because this organism is a virus, which means one of its characteristics is that it is incapable of reproducing by itself. It reproduces by taking over the machinery of the human cell.

Human Immuno-deficiency Virus (HIV) is the virus that causes AIDS. 

HIV attacks your immune system. Immune systems are made up of cells that fight infection and disease. One of the most important of these cells that fights infection is called the CD4 cell. It is also called the "T-helper cell" or T-cell.

  • Once HIV is in the body, it infects CD4 (T-cell) cells and makes copies of itself in these cells. This makes new viruses. These new viruses are let out into the blood and infect other CD4 (T-cell) cells. This process kills the CD4 (T-cell) cells and the CD4 (T-cell) count goes down.
  • As CD4 (T-cell) cells are lost, the immune system becomes weak. This makes it harder for your body to fight certain conditions that do not affect most healthy people. These include opportunistic infections (OIs) such as pneumonia, herpes, tuberculosis, and cancers such as lymphoma and cervical cancer.
Currently there is no known cure for HIV. However, there is a variety of drugs which can usually keep HIV in check.
 

Prognosis

A prognosis is an educated guess about the probable course and outcome of a disease.

A prognosis can change over time as the patient's health condition changes and as new medical advances are accepted by the medical community.

Doctors use statistics and personal experience to help estimate prognosis.

A prognosis does not indicate what will happen to any particular individual.

It is up to you whether to ask for a prognosis, or for how much information to ask for.

NOTE: Some doctors believe that telling a patient a prognosis can become a self fulfilling prophecy. We repeat again: A prognosis does not indicate what will happen to any particular individual.


Relative Survival Rate

"Survival rate" refers to the number of people with a certain type and stage of a health condition survive the condition. Generally a time period is included when speaking of "survival rates." For instance, "5 year relative survival rate."

The word "relative" as used in "relative survival rate" means that people who die of other causes are not included in the survival rate calculations.

Survival rate does not indicate the physical status of the patient at the year indicated. It only indicates the percentage of people with the particular disease who are still alive.


Statistics

Statistics:
  • Are averages.
  • Are about the experience of large numbers of people.
  • Are about treatments and results that happened in the past - before the medical advances that take place daily.
  • Include people who did not receive the best care available and people who did not follow recommended regimens.
  • Include people who had other medical problems.
  • Include people who refused all treatment.

Statistics do not indicate what will happen to any particular individual.