Three years ago, Jen Billock started experiencing intense, chronic pain in her abdomen and stopped being able to keep food down. While doctors thought her gallbladder was to blame, tests showed the organ was healthy. But they decided to operate after learning more about her family history: Billock’s maternal grandmother and great aunt, as well as her paternal grandmother and several paternal aunts, all had their gallbladders removed.
Surgery revealed that Billock’s gallbladder was diseased — pockmarked and filled with deposits. She now attributes her health to knowing and sharing her family medical history. “I’d asked my parents for it years ago,” says Billock, 36, “and I was grateful to have it.”
Why collect a family medical history?
Sometimes called a medical family tree, your family medical history is a record of the diseases and health conditions your close family members have been diagnosed with.
A complete, detailed history helps doctors understand if you’re at a heightened risk of developing certain diseases that tend to be passed down through the generations. A family history of heart disease, for example, can be as strong an indicator that you’ll develop a heart issue as high cholesterol or blood pressure.
When your doctor knows you have a higher risk for a certain disease because of your family history, they might run tests they otherwise would have skipped, start screenings earlier than is typically recommended or more closely track certain metrics. Your doctor might also recommend lifestyle changes to help you lower your risk.
“In some cases, a family medical history is very important,” says Jennifer Zweig, a family medicine doctor in Long Beach, California. “It helps paint a more complete picture of what’s going on with a patient.”
For example, a patient whose parent had colon cancer should start getting colonoscopies 10 years before their parent was diagnosed. Knowing about family members who died before age 50 from a heart attack is also crucial, as it could suggest an underlying genetic issue affecting the heart. “We’d take chest pain a lot more seriously with a patient like that,” says Zweig, “and likely work it up more.”
What information should I gather?
When gathering your family medical history, close relatives are the most important — your grandparents, parents, siblings, aunts and uncles and cousins. “Usually when you go out more than two degrees, the risk is pretty mediated,” says Zweig.
Ask family members about major diseases like heart disease and cancer, chronic conditions such as asthma or allergies, and birth defects. Take special note of any conditions that developed early, like high blood pressure in one’s 20s, or any issues that affect more than one relative.
Whenever possible, include your family member’s age at diagnosis, when they died and their cause of death. It’s also helpful to include where the family member lived and their ethnicity, since some ethnic groups often have a higher prevalence of certain diseases. Keep information up to date and share any changes with your doctor.
Zweig finds that patients often know about rare diseases that run in their family, but when it comes to more common, chronic conditions like diabetes, heart disease, cancer and strokes, people are less informed. What’s more, patients who do have information on family members’ chronic conditions usually don’t have details.
“Patients typically have a vague awareness,” Zweig says. It’s not that useful to know your grandfather had heart disease. Instead, collect specific information, such as that your grandpa had a hole in his heart repaired, or that he had rheumatic heart disease or congestive heart failure.
How should I collect the information?
The best way is to sit down with your relatives and take extensive notes.
Some people create a document on their computer to share with close relatives. Tools like the U.S. Surgeon General’s My Family Health Portrait are also available.
One of Zweig’s patients with a family history of stomach cancer prepared a detailed information sheet on his close relatives’ health and brought it to his appointment. “It was definitely very helpful,” she says.
When Kelly Campbell, who lives in Toronto, was thinking about starting a family, she sat down with her parents, who noted that her maternal grandfather had a history of blood clots. Campbell’s mother also had a mini-stroke in her early 30s.
The information prompted Campbell’s doctor to run a test to see if she might have a blood clotting disorder. Positive test results led the doctor to prescribe baby aspirin during her pregnancy and a blood-thinning drug postpartum. Campbell said she was glad she compiled the information before getting pregnant.
What if my relatives aren’t alive or willing to talk, or I’m adopted?
If you can’t have a conversation, you have a few options.
If you’re caring for an elderly relative who has granted you access to their medical records, those documents can be a valuable source of information. For relatives who’ve died, obituaries and death records can sometimes offer useful information. Public records like death certificates are often available in county record offices.
You can also use records to help substantiate or refute medical information that family members have shared with you. For years, Zweig kept a note in her own family medical history that her maternal great-grandfather died from diverticulitis, a condition in which parts of the intestine become inflamed or infected. But a family member later found a death certificate that showed he’d actually died from a ruptured gallbladder.
Still, Zweig cautions that death certificates aren’t always accurate. She fills out death certificates for her own patients and those she sees in the hospital. For an elderly patient who dies alone at home, for example, the cause of death may not be certain. “Sometimes, it’s really just your best guess,” Zweig says.
If you’re adopted, your adoptive parents may have received medical information about your biological parents when they adopted you. See if they can dig up any documents. Adoption agencies may also keep medical information on file.
In some cases, though, it may be impossible to create a complete family medical history. If that’s the case, “you shouldn’t stress too much,” says Zweig, “because most of our focus is on how the patient is feeling and what’s going on with them right now.”