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When your doctor asks about hereditary health conditions that have affected
family members, what illnesses come to mind? Do you consider only those
diseases that have purely a genetic cause, such as sickle cell anemia,
Huntington Disease, muscular dystrophy, or cystic fibrosis?
The truth is you should be considering many health conditions, including
cancers, heart disease, diabetes, forms of arthritis, mental illnesses,
abnormal reactions to anesthetic medications, vision and hearing disorders,
immune system deficiencies, chemical dependence such as alcoholism, and
many others. Experts claim that as many as 1/3 to 1/2 of all health conditions
such as these that affect man have a genetic component...a genetic connection
if you will. Most of these conditions are classified as multifactorial
disorders, meaning that both genetic and environmental factors play a
part in their occurrence. Identifying multifactorial disorders that run
in your family can help your doctor prescribe preventive measures to help
you avoid these conditions. Sharing a comprehensive family health history
with your doctor is therefore paramount in keeping you, and other family
members, as healthy as possible. Dr. Joseph Thompson from DePaul Health
Center in St. Louis, Mo., states,
Although compiling a genealogical history of your family is important,
taking the time to trace your family's health history can offer a lifesaving
picture of your future. If people would take a proactive role with their
health, many could live 15 years longer. One of the best ways to do
that is to be aware of your family's medical past. I could perform numerous
and expensive tests, and it wouldn't give me nearly the information
that a person's family medical history can.
And a recent article published August 15, 1996 in The Wall Street
Journal reported that the American Medical Association recommends
that every family maintain some kind of health history. In that same article,
Dr. Regina M. Benjamin, a member of the American Medical Society's Board
of Trustees, was quoted as saying, "Every time we investigate an illness
or see a patient for the first time, the family history will guide us
as to what direction to take." And in a recent June 30, 1996 issue of
Parade — The Sunday Newspaper Magazine, an article written
by Hugh Downs reported, "It's your health — take responsibility....
Before you see any physician for the first time, be prepared: learn
as much as you can about your family's medical history."
Doctors and their patients have a unique relationship. In this day and
age, it should be considered a partnership more than anything else. It
takes both parties to receive and administer the best possible health
care. One very important responsibility of the patient is to provide the
doctor with family health information. In turn, one of the doctor's responsibilities
is to take that information and interpret what it means in regard to his/her
patient's risk of developing health problems. The doctor can then prescribe
an individualized plan of prevention, such as scheduling more frequent
checkups or tests, recommending diet and/or lifestyle changes, and/or
ordering medication to help prevent or delay the development of a disease
to which the patient is predisposed because of heredity.
Many people today realize how important keeping a family health history
record is, but are at a loss as to how and where to begin. The best way
to present the information to your doctor is in the form of a family health
pedigree — a single paged graphic representation of family members
and health conditions. Health professionals understand health pedigrees
and are thrilled when a patient presents family health information in
this manner. Not only can the doctor see what familial health conditions
are present, they can also see how closely the affected family members
are/were related to their patient and get a good idea of how these conditions
are being transmitted generation to generation. All of this information
is vital in helping doctors determine a patient's risk for developing
disease. Once risks are known, prevention can begin.
Many genealogists understand that including health data in their search
for family information is important, but a family health pedigree is a
different animal from genealogical pedigrees. Some differences seen in
health pedigrees include:
- no names are listed;
- documenting three to four generations is usually sufficient;
- they extend horizontally as well as vertically, including great-aunts
and great-uncles, aunts and uncles, first cousins, and siblings;
- standardized symbols recognizable to health professionals are utilized
to depict gender and biologic and non-biologic relationships.
If you are going to take the time and make the effort to construct your
family health history, do so in the format health professionals can utilize.
Your doctors have but a few minutes to "hear what you have to say" during
a medical visit, and they certainly cannot research and record your family's
health information for you. It's a job you need to do both for yourself
and other family members. It's easy to convert a genealogical record into
pedigree format; creating a family health pedigree is easy even if you're
not a genealogist or family historian. Graphing out the pedigree is quick.
Collecting and adding the health data can take some time depending on
how large your family is and how accessible family members are. The important
thing is to begin now. A family health history is an on-going living record,
a record that is vital to your well-being and the well-being of future
generations. Where can you go for guidance? The book Genetic Connections
— A Guide To Documenting Your Individual And Family Health History
(Sonters Publishing Ink, 1995) was written by a professional nurse to
guide people step by step in the process and is the most complete guide
on the market. As stated in a review by Joan Kirchman Mitchell, Ph.D.,
published in the June issue of the National Genealogical Society Quarterly,
"As a family historian and a teacher of genetics and human biology for
over thirty years, I recommend without reservation this text and its methodology
to anyone interested in establishing their family's health history."
Concerned that family health information may be used against you in some
fashion? If so, you are not alone. But don't let your concerns prevent
you and your family from receiving the best health care possible and living
the longest, healthiest lives possible. Keep in mind, not only is using
family health information to impart negative consequences unethical, it
is illegal in many states, and new states are climbing onboard that bandwagon
every day. In addition, the recent Health Insurance Portability and Accountability
Act legislation signed by President Clinton in late August provides Federal
protection against losing your health insurance because of "pre-existing
conditions." The best way to protect yourself is to learn the most you
can about disorders that have a genetic component and speak to your doctor
about your concerns regarding the confidentiality of your health records.
Learn where your state stands on such issues and be active in legislative
processes to get protective laws enacted if none presently exist.
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