Be Aware Of Family’s Health Past
Knowledge is power, but it can also be scary.
Carol Krause has undergone two major cancer surgeries in the last five years. Doctors removed her uterus and ovaries during the first operation and performed a mastectomy in the second. During the hysterectomy, which she had at 35 before she could conceive a wanted second child, the surgeons found and excised a cancerous one-third of her colon.
She said she owes it all - plus the more precious result of cancer-free status - to her family tree.
When Krause’s mother died of ovarian cancer in 1972, Carol’s sisters, Kathy and Peggy, started compiling a family medical history. Most interesting was a paternal grandfather who died at age 33 of colon cancer and an Aunt Bertha who, their father said, died young of stomach cancer.
None of the Krause daughters made a connection between the three different cancers, and there was little medical literature published then to second-guess them. The medical family tree gathered moss.
More than a decade later, Krause’s father was diagnosed with cancer of the prostate and ureter. His condition prompted Carol to ask again about Bertha; her dad seemed to think maybe it was colon cancer, not stomach cancer. She was grateful it wasn’t ovarian cancer. News of comedian Gilda Radner’s struggle with the disease was a hot topic, and by then researchers warned that two cases of ovarian cancer in the family would put you at high risk.
But just a week after her father succumbed to his illness, Carol learned that a third sister, Susan, had been diagnosed with ovarian and uterine cancers. The other sisters were shocked and immediately consulted doctors about their chances of contracting the diseases. The answers were not good: a 50-50 chance. Doctors recommended that each sister schedule a prophylactic hysterectomy to ward off any potential cancers and suggested a detailed workup of their colons.
That’s the bad news. Better is the fact that all of the sisters are leading productive lives today, though Kathy still is battling ovarian cancer.
“The whole point is to catch the disease early enough or even before it starts,” said Krause. “Then you have to stay on top of it.”
For her part, Krause has an extensive colon exam (colonoscopy) and mammogram once a year and sees her various doctors for at least two annual checkups. She also is keeping good notes for the family health history.
Krause, a former television journalist, has converted her personal research into a book, “How Healthy Is Your Family Tree?” (Fireside, $12). It is a workbook of practical information such as sample family tree charts, resource organizations, pertinent addresses and form letters to acquire medical records and death certificates. A step-by-step approach will help anyone interested in developing what doctors call a pedigree.
“We’ve always done some form of a family medical history,” said Dr. Henry R. Black, director of the preventive medicine unit at RushPresbyterian-St. Luke’s Medical Center, in Chicago. “Usually it has been the major things (deaths, surgeries), but now we are asking about more conditions that may indicate possible problems. For example, if someone’s parent has high blood pressure, that may predispose the patient not only to high blood pressure but also a stroke.”
One problem: Many patients don’t know the health history of members of their immediate family.
“This is especially true of the geriatric age group,” Black said. “They lived in a time when (serious health matters) were less discussed.”
That means the doctor - or family member constructing a medical tree - must play detective.
“Maybe your relative simply says her mother died quietly in bed,” said Black. “But if you ask a few questions, she recalls the mother always had a problem with swollen ankles or bone pain.”
The swollen ankles could very well translate to heart failure, particularly if the relative produces other clues such as chest pains or a case of “dropsy.” The bone pain might reveal a case of sickle cell anemia, particularly in an African American household.
Your best strategy is to gather as much information as possible. Krause suggests one person in the family be the main reporter for the project, while others provide needed support.
You can start with oral histories from any living family members. Have fun with it, and you may learn more than health information.
Once you have worked through conversations, it is a good idea to obtain death certificates and medical records for any relative with an incomplete or suspect background.
The paperwork might surprise you. To illustrate, when Krause eventually acquired her Aunt Bertha’s death certificate (filed in 1942), she was shocked to discover her father’s sister actually died of ovarian cancer, not stomach or colon cancer.
Personal medical records are another place to mine for family health nuggets. Ask living family members to request any pertinent reports from doctors and hospitals. Most medical authorities will release this information; if there is any problem, some states say that individuals can acquire such records by directing an attorney or subsequent treating doctor to do so. When a person has died, the records are harder to secure, and is sometimes only available to the executor of the estate.
Adopted children require special sleuth work, especially if the adoption was private. The first step is to communicate with the biological mother through an intermediary if that is feasible.
Or you may contact the original adoption agency. (The Adoptees Liberty Movement Association, P.O. Box 154, Washington Bridge Station, New York, N.Y. 10033 can help you get started.) Then you need to discover the state law that applies and whether it is allowable to uncover medical records.
xxxx COVER BASES WHEN DOING HEALTH HISTORY Acquiring medical history about your relatives can be interesting work, but also hard work. According to “How Healthy Is Your Family Tree?” by Carol Krause, here are 10 important pieces of information about each person which you will want to gather from conversations with family members, death certificates and medical records: Exact date of birth. This is best determined by hunting down a death certificate. The year provides the age at death, which may offer clues into genetic links. Cause of death. Be specific. This is the most important piece of information on any entry on the family tree. The death certificate is a primary source. Age of onset of fatal disease. This might mean you are at higher risk earlier in life if the relative developed the disease years before dying from it. Other illnesses and age at onset. Perhaps the family member was treated successfully for an illness at an early age, but this is still a red flag for you. Did a relative smoke? Maybe this habit caused the problem rather than genes, or at least accelerated the process. Did a relative drink excessively or abuse prescription or recreational drugs? Substance abuse can be a pattern in families, regardless of genes. Also, it might cause heart or liver disease that is not hereditary. Any miscarriages or stillbirths. Not a clear-cut case of genetics, but such information might help doctors decide on certain aggressive treatments. History of mental illness or institutionalization. Some mental problems are believed to be hereditary; such information can help identify early symptoms that might otherwise go undetected. Acquire physical descriptions. While it might simply be fun to record such facts, there might be indicators for health obstacles. Unusual physical characteristics. Everything from early baldness to blindness to persistent rashes might provide some genetic insights. Chicago Tribune