Jenn Perry knew she might have a high risk for breast cancer—her mother was diagnosed at age 36 and died at age 44, and her sister also developed the disease at a young age. But it wasn’t until Perry herself received a breast cancer diagnosis, also at 36, that she started to ask more detailed questions about her family’s past.
Perry and her sisters rushed to get her mother’s medical records, along with information about aunts, uncles (including one who died young of leukemia), and cousins. A genetic counselor reviewed the notes and suggested Perry and her sisters be tested for a rare genetic condition called Li-Fraumeni syndrome.
Perry’s results were positive. This placed her at high risk for developing multiple types of cancer—including cancers that form after radiation treatment. In fact, her mother had died not from her initial breast cancer, but from a soft tissue cancer induced by the radiation used to treat it.
With this information, Perry chose a different route. She had a double mastectomy and hysterectomy. Now, she’s the co-founder and president of the Li-Fraumeni Syndrome Association and a passionate believer in understanding your medical past—preferably before you face a serious health issue yourself.
“Until you are in a situation where you really need it, you don’t really think too much about it,” Perry says. “When you really do need that information, it’s probably not as easy as it seems to get it.”
And it isn’t just cancer. Knowing you have a family history of heart disease or diabetes may change the way your doctor approaches any symptoms you have and preventive steps he or she recommends.
“Family history is, I would argue, one of the most important predictors of disease,” says Joshua Schiffman, who treats and studies pediatric and inherited cancers at the University of Utah’s Huntsman Cancer Institute. And it’s only more critical with personalized medicine’s progress. As doctors amass increasingly large databases of genetic details about disease risk and sophisticated methods of detecting and treating familial conditions, an old-school record of who had what actually becomes even more important in deploying them.
“Just because you have a family history doesn't mean 100 percent you’ll get whatever diseases run in your family, but it does mean that you are at increased risk,” Schiffman says. “There are steps today that we can take that we couldn’t take 10 years ago to try to alter the course of your disease.” For instance, people with Li-Fraumeni Syndrome can undergo yearly full-body MRIs to detect cancer early, testing that would be unnecessarily expensive and result in false positives for people with different genetics. These steps will help you build your own family history.
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Draw your family tree. You’ll definitely want information from your parents, grandparents, siblings, and children, says Jason Flanagan, a women’s health expert for the National Society of Genetic Counselors and director of genetic counseling at Sanford Health in Sioux Falls, SD. Also include aunts, uncles, cousins, nieces, and nephews. The more complete your records, the more helpful the history is to everyone. Online tools like My Family Health Portrait give you a starting point and a way to store and share what you find. The nonprofit advocacy group Genetic Alliance also offers a downloadable guide. It may help to divide and conquer: Perry and her sisters worked as a team, contacting family members based on who had a closer relationship and backing each other up when another sister couldn’t get through.
Start asking questions. Call each of your living relatives—or use an event like a family reunion to have face-to-face conversations. Another online service, ItRunsInMyFamily.com, uses social networking to request details from relatives and a chatbot named dokbot to guide each person through the process (Schiffman helped design and launch the service, currently in beta). Get specific: For each person, find out their birthdate, where they lived, and, if they’ve passed away, where and when they died. Ask about major health issues, including heart disease, diabetes, cancer, and strokes—and the age at which they developed (the earlier it was, the higher the chance of a genetic link). Also delve into chronic conditions like asthma, high blood pressure, and allergies. Gather as much detail as you can—for instance, did Uncle Rob have bone cancer or prostate cancer that spread to his bones?
Embrace the awkwardness. Flanagan acknowledges these chats can be difficult, especially in prior generations that aren’t used to talking openly about medical problems. Start by pulling out photo albums and asking general questions about relatives’ lives. This makes the conversation flow and also provides cultural context—lung cancer in an older adult with a pack-a-day habit or who worked in a coal mine has a far different implication than someone who worked in an office, never smoked, and was diagnosed at 45. If someone is still reluctant to participate, try appealing to their better nature. Tell them: “If you know your family history, you might be able to help your children or your niece, your nephew. Suddenly when other people’s lives are on the line, people become much more willing to share,” Schiffman says.
Reveal what you've found. Share any information you can gather with all your relatives—and your doctor. He or she will check for patterns, such as multiple relatives developing cancer or heart disease at a young age (for instance, in their 40s or 50s), says Brandon Welch, a biomedical informatics expert and assistant professor at the Medical University of South Carolina, who also works on ItRunsInMyFamily. In some cases, especially if you’re planning a family yourself, you might get a referral to a genetic counselor for more specific testing and advice.
You don’t necessarily have to rush to make an appointment—“there’s never a family history emergency, because if it’s in your DNA, it’s been in your DNA since you were born,” Schiffman says. But do take the details in at your next visit, especially if you have a specific symptom that could be linked to a genetic condition (say, a strange lump if your family’s full of cancer). Ask your doc if you should have different screenings or tests to detect familial diseases or take specific preventive measures to avoid them.
For instance, in addition to her cancer treatments, Perry takes a statin and stays diligent about her diet and exercise habits based on the fact that she also has heart disease in her family tree.
“It really changes how you live,” she says.
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