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Family Health History Day

A simple chart to track cause of death.

I've been lecturing and teaching genealogy for over 25 years and I find it interesting how cyclical lectures are. A few years ago it seemed that everyone wanted my lecture of Finding Women in your Family Tree. I'm not sure why but I probably gave that lecture 10 times in one year. The following year it was Immigration. I can only surmise that it was all the political talk of illegal immigration and border walls that made it the lecture of the year. This year it's Health History...the pandemic?

I have written about Health History in November of every year since 2007. Why? Because each year since 2004, the Surgeon General has declared Thanksgiving Day to be Family Health History Day. I still haven't seen a notification from the Surgeon General for this year, however, the National Human Genome Research Institute has announced that tomorrow, November 17th, is Family Health History Awareness Social Media Day. You can follow them on Twitter, Facebook or Pinterest.

In 2012 I created a lecture, Saving a Life: Your Family's Health History and gave it a few times...the last time in 2013. It's stayed on my lecture list, and this year I got a request for it. Since I hadn't given the lecture since 2013, it was due for a complete re-write...which is a time consuming process. But then, I got another request and then a third and fourth request. Actually I'm thrilled about it. Health History is something near and dear to my heart and one of the reasons I initially was interested in Family History.

If you've been following me for a while, you probably have heard my 1969 three months after she was born, my niece, Karen, was diagnosed with Cystic Fibrosis (CF).

If you are not familiar with CF it is a recessive disease which means both parents have to be carriers in order to pass on the disease. If only one is a carrier, they can pass on the trait, but not the disease. At the time, there was no test for a carrier. Since we knew that my sister was a carrier, there was a chance that I too, was a carrier but my husband's status was unknown. For many people, the first time there was an awareness of a recessive genetic condition was when two carriers married and had a child with the disease. In the 1990s a carrier test was developed for CF and both my younger sister and I were tested. I was a carrier, but my younger sister was not. Today since most of us are familiar with DNA testing we understand the random nature of inheritance, but at the time, it was a surprise. Because I was a carrier, my three daughters were tested and two are carriers, one is not. In most states today, carriers are typically picked up in pre-natal testing or the condition picked up during infant testing after birth. Neither of my parents were tested, so we don't know which side of the family carried the gene. The there are many mutations that can causes CF, the most common is the DeltaF508 gene located on Chromosome 7. In the past, I have looked for families where children have died young of some type of lung disease. With the advent of chromosome browsing and specifically dnapainter, I am now looking at those individuals who share the specific area of DNA on Chromosome 7 that both my sister and I share. Perhaps these families have not done DNA testing and they are not aware of the condition because two carriers have not produced a child with the disease. Through health testing at 23andme, Ancestry, MyHeritage and FamilyTree DNA you can now get additional information on carrier status for many other genetic diseases, as well as traits.

As exciting as DNA testing is however, the most important information for you and your family is your health history. Each time you go to a new doctor, the first thing you are going to be asked to do is to complete your family health history. I'm sure you've heard the phrase, "it runs in the family," and that can refer to anything from blue eyes or big ears, to heart disease, cancer, alcoholism or mental illness. When I first moved to Florida and was looking for doctors, I created a medical pedigree. At the same time, my girls were out on their own, and finding doctors, and I would get a call asking, "what did Nanny die of?" So the medical pedigree worked for them as well. Four generations is usually sufficient, but I went a bit overboard, as I did four generations back from me, then added two generations down to my children and nieces and nephews. It's also important to go wide...information on aunts, uncles and cousins is also important. At the time, I created the chart by drawing the boxes, circles and lines using my word processing program. Ethnicity is an important part of a medical pedigree as many diseases have an ethnic component. Tay-Sachs is primarily Ashkenazi Jews, and Sickle Cell among Blacks. Cystic Fibrosis affects mostly Northern Europeans as well as Ashkenazi Jews. There is a high incidence of CF in the Irish population. The Irish are also prone to Celiac disease (which is one reason I can get gluten free foods in almost any restaurant in Ireland 😀).

One of the things that shows up on my pedigree is gastrointestinal cancer. I had an aunt who died of it in 1997, but I also find it on both sides of my family going back three generations. Sharing this with my doctor allowed for diagnostic tests which showed I had a pre-cancerous condition. A combination of medication and diet and regular diagnostic tests have kept the condition under control for 20 years with no progression. So these are the things you can help your family understand.

As genealogists and family historians we collect health information through death certificates, obituaries/newspapers, and even the mortality schedules of the 1850-1880 census. We also interview and talk to our relatives. Putting that information together is now easier than ever. Ancestry Health allows you to create a medical pedigree either in graphic form or as a report.

As part of the Health History Day Program from the Surgeon General, there is the My Family Health Portrait. In an interactive format, it walks you through the questions to create a medical pedigree. Once completed you can print it out either as a medical pedigree chart, or a table. At the end of the session, the information is stored on your computer for privacy. I've been updating mine for years...each time I upload the data from my computer, make additions and/or changes and re-save the file back to my computer.

This year Thanksgiving is likely to be different because of COVID-19. My family will be gathering via Zoom (and I heard today that Zoom is taking off the 40 minute restriction for Thanksgiving Day). If you're doing a Zoom Thanksgiving, you can still ask the questions and/or share the information you know with other members of the family. I hope you'll do it.

Happy Thanksgiving, Happy Hunting and Stay Safe!

For additional information on Health History check out my Links and Resources.

If your Society is looking for a speaker, have them check out my list of Lectures.

All can be done as a Webinar.

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Donna, this is such an important article. Thank you so much for making me aware of My Family Health Portrait. I did not know that both parents needed to be carriers of the recessive gene for CF.

I am always Googling causes of death from death certificates, so I have the information. I like the idea of being able to organize it and display it in a chart. Perhaps it is the pandemic that gives more meaning to family health.

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