We're just a little more than a week from Thanksgiving here in the US, and since 2004, the Surgeon General has declared Thanksgiving Day as Family Health History Day. Since it's the day when families gather together, it's a great time to ask questions. As genealogists we are frequently the keeper of this information, gathering data from death certificates or family interviews. Have you shared this information with family members? It’s time to prepare to have this discussion at Thanksgiving.
I’ve always been interested in health history...in fact, it is one of the reasons I began doing genealogy. In the early 1970s my four year old niece died of cystic fibrosis. This is a recessive genetic disease which means both parents have to carry the gene in order to pass on the disease to their child. There is a one in four chance with each pregnancy that the child would have CF. If only one parent carries the gene, then the trait could be passed on to the child who would become a carrier. Since my older sister carried the gene, there was a possibility that I too carried it, although at the time there was no test for a carrier. In the 1990s when a test was developed I discovered I did carry the gene, although my younger sister did not. I then tested my three daughters; two carry the gene and one does not. When one of my daughters who is a carrier married, her husband was tested and he does not carry the gene. The chart above is a simple representation of a health history, done in a spreadsheet, but because it only looks at cause of death for direct ancestors, it doesn’t tell the whole story. It is, however, an easy way to view a basic health history.
Using Unlocking Your Genetic History by Dr. Thomas H. Shawker, I created a medical pedigree for myself and my children. At the time, I had recently moved to Florida and was in the process of looking for doctors, and my children were also establishing medical contacts in their various localities. One of the first things you do when seeing a new doctor is provide a health history and I was getting frequent calls with questions like “what did Nanny die from?” The charts helped, but I also discovered a vast range of reactions from doctors. Some understood it and asked questions, where others just filed it.
Medical pedigrees don’t include names, but just show relationships. The arrow points to the starting person. Circles represent women and squares for men, and a diagonal line indicates deceased. There is a key which shows the various diseases. The dot inside the boxes indicates a known carrier for cystic fibrosis. The green boxes indicate stomach cancer which I was tracking. On my side there was a great deal of cancer, whereas on my husband’s side there was more heart disease. Although there was no breast cancer on my side of the family, my husband had both a maternal and paternal aunt with early onset breast cancer, obviously a flag for our daughters.
Ethnicity is also important on a medical pedigree, as there are some diseases that are more prevalent in a particular ethnic group. Cystic Fibrosis tends to occur in northern Europeans and Ashkenazi Jews and Sickle Cell Anemia in those of African heritage. Ashkenazi Jews also tend to carry the BRCA I and II genes for breast cancer in higher numbers. I follow a gluten free diet because it seems to help with inflammation from my arthritis (which also runs in the family). I love it when I visit Ireland because you can get gluten free everything. What I discovered is that the Irish have a very high incidence of Celiac Disease.
Not all illnesses are inherited or have a genetic component; some are environmental. We know smoking causes lung cancer; tuberculosis was rampant in the 1800s; but knowing your health history and discussing it with your doctor can flag issues which can be tested and tracked. Stomach cancer appears on both my maternal and paternal sides and it seems that I have always had stomach issues. Stomach cancer is very curable in it’s early stages, but can be deadly if not caught. I had a maternal aunt who died in 1997 of the disease. Because of the family history, I arranged for a baseline endoscopy and it turned out that I had Barrett’s Esophagus, a pre-cancerous condition. That was in the late 1990s and I go every 18 months for an endoscopy to check the condition which, because of medication has not progressed. I am a big believer in sharing this information with family.
Since I began writing on health history, a lot has happened. DNA testing has taken off, not only in the genealogy community, but also for others who simply want to know their ethnicity. My first DNA test was with 23andMe in 2009. I tested for medical reasons (it took me a while to get into the genealogy matches) and received extensive health information. As you probably know, 23andMe was required to pull back some of their reports and go through a process of certification with the FDA. They are back with their medical testing, but in the mean time, MyHeritage and Ancestry have also jumped into the market. Ancestry announced their Health services in October and I ordered mine that day. I was hoping to have some results to discuss by now, but my test is still "in progress." One of the differences with the Ancestry results is that they are reviewed by a physician and I had to fill out a family health history questionnaire. I'm not sure whether the delay has been caused by an initial surge at announcement, or whether the testing and review just takes a long time. You can find links to various articles and services on my Health History Resources page.
So this Thanksgiving, do your family a favor and share the medical information you have. It may save a life.