By Mylika Scatliffe
October is National Family History Month. Gathering family together for activities like creating family trees and hearing unique family history and lore can be an exciting way to recognize the month.
Attending a family reunion, visiting the family matriarch or spending time with a great-grandfather may spark feelings of deep familial and ancestral connection.
Researching the origin of a family name, how ancestors arrived in the United States, or even discovering how your relatives were affected or took part in major historic events can be fascinating, while also instilling a sense of familial pride.
Then there’s the mundane part – researching the family health history. Probably not as entertaining, but equally important.
Diabetes. Uterine fibroids. Sickle cell disease. Breast cancer.
All of these diseases and conditions have something in common. They frequently run in families, especially Black families. Furthermore, diagnosis and treatment of these and other conditions may be affected by unequal access to health care due to health disparities.
According to the Centers For Disease Control and Prevention (CDC), “most people have a family health history of at least one chronic disease, such as cancer, heart disease, and diabetes. If you have a close family member with a chronic disease, you may be more likely to develop that disease yourself, especially if more than one close relative has (or had) the disease or a family member got the disease at a younger age than usual.”
Family health history is often used interchangeably with genetics, but family health history captures more than that– it also includes shared behaviors, environments, and cultures.
When considering factors for chronic diseases like diabetes or certain breast cancers, family history is frequently included in the list of nonmodifiable factors–such as race, ethnicity, or age, which suggests family history cannot be changed.
It is a fact that past family illnesses and conditions can’t be changed but knowing family health history can alter the future for better outcomes.
“You can’t change your genes, but you can change unhealthy behaviors, such as smoking, not exercising or being active, and poor eating habits,” reports the CDC. “If you have a family health history of disease, you may have the most to gain from lifestyle changes and screening tests. In many cases, healthy habits can reduce your risk for diseases that run in your family. Screening tests, such as blood sugar testing, mammograms, and colorectal cancer screening, help find early signs of disease. Finding disease early can often mean better health in the long run.”
Being intentional about incorporating healthier behaviors as part of overall lifestyle changes or making informed major life choices are big steps in changing the trajectory of your family’s history.
Sickle cell disease is an inherited blood disorder that causes deformity of red blood cells. It affects mostly Black people in the United States, according to Dr. Lydia Pecker, director of the Young Adult Clinic at the Johns Hopkins Sickle Cell Center for Adults.
“Sickle cell disease is also common in other parts of the world, particularly in areas where many were afflicted with malaria. Where you used to see malaria, you now see sickle cell– including in sub-Saharan Africa, Middle Eastern countries, and India,” said Pecker. “The Transatlantic Slave trade means there are African descendants in different parts of the world, so sickle cell disease is common in those areas as well. You see it in the Afro-Brazilian population, for example.”
“Most people know about the severely painful crises that occur with sickle cell disease, but what many don’t know is that if you have a copy of the sickle cell mutation, you’re protected to some degree against fatal malaria infection,” added Pecker.
Since 2006, testing for sickle cell disease has been routine for all newborn screenings in the United States. However, the topic is rarely addressed when adults are making decisions about who to marry and with whom to reproduce.
If you have the trait for sickle cell and you reproduce with a partner that has the trait, there is a 25 percent chance that each child you give birth to may have sickle cell disease, according to Pecker.
“The first challenge for you and your partner is to understand yours and your partner’s risk. Testing may have occurred so long ago that you can’t remember the results, or maybe you were never actually tested or weren’t given the right test. It’s important to get the right test and the right interpretation of the test to know what mutation of the sickle cell gene you and/or your partner may have,” said Pecker.
While some Middle Eastern and African countries have rigorous pre-marital sickle cell testing requirements, there is no mandatory testing prior to marriage in the United States.
Sickle cell trait in a family goes back for as long as that family’s existence. It is not a dominant trait. If an individual has the trait, it came from their mother or father, but if an individual has the disease, a copy of the trait was received from each parent, according to Decker.
Having a relative with a genetic or hereditary condition is not a guarantee that an individual will develop the same condition but knowing the family history and predisposition allows individuals to be proactive in reducing risks, particularly for a population such as Black people which already experiences wide health disparities.
The easiest way to gather family history is to talk to and ask relatives about their health and the health of those who may have already died. It seems simple but discussing past illnesses may be difficult for some older family members, boring for younger ones, and they might be reluctant to talk about it. Starting the hard conversations normalizes the topic and makes sharing information easier. Medical records and documents like obituaries and death certificates help to fill information gaps.
Talking about illnesses and diseases are not the parts of family gatherings that everyone will enjoy the most, or even enjoy at all, but taking this crucial first step can rewrite history for future generations.
The CDC recommends not only knowing family health history but maintaining it and acting on what is learned. The CDC website provides free tools and resources to help organize family health information, allowing for easy reference when sharing with medical practitioners. If doctors have this information, they can partner with individuals to make informed decisions about screenings and preventive care.
Family health history is invaluable, especially to Black people. If we know our history, we can use the knowledge to fight historic, systemic disparities and advocate for ourselves and our future generation’s health care.