I’ve been back in Connecticut for Thanksgiving and the Internet connections were intermittent and slow, so this blog is a week late. Had I known I wouldn’t be able to upload it, I probably would have written it earlier <g>. On November 20th, the Acting Surgeon General, Steven K. Galson, M.D., M.P.H., declared Thanksgiving 2007 the fourth annual National Family History Day. He encouraged everyone to use the occasion to discuss and identify health problems that seem to run in the family.
A recent drug advertisement talks about how health problems can be caused not only by the environment, but also through heredity. For many years, health professionals have known that many common health problems run in families. The more you know about your family health history, the more you can do to reduce your risk of serious illness. As genealogists and family historians we routinely collect information about our ancestors and the causes of their deaths but putting the information together in a documented health history can not only assist your physician, but may save your life. Passing this information to your children or other family members may also provide them with life saving information.
Health history has always been of interest to me. My niece, pictured above, was diagnosed with cystic fibrosis when she was a few months old and died before her fifth birthday. Her diagnosis was the first time we learned that out family carried the CF gene. This gene is a recessive gene which means that both parents have to carry it in order to pass on the disease to their children. With each child there is a one in four chance that they will have the disease. That meant my sister was a carrier, as was her husband, but at the time, there was no test for carriers, so when I became pregnant with our first child, I didn’t know if I carried the gene. If I did, and my husband didn’t, then I could pass on the gene, but the child would not have the disease. It was a scary time (as well as my other pregnancies) however, none of my three daughters have the disease.
In the 1990’s a simple blood test was developed to test for carriers of the cystic fibrosis gene. The first step was for me to be tested, as well as my younger sister. The results showed that I did carry the gene, but my younger sister did not. Since she didn’t carry the gene, there was no need to check her sons. My three daughters were next to be tested. The oldest and youngest carry the CF gene, but my middle daughter does not. While there is no cure for cystic fibrosis, life expectancy has increased. Hopefully when the time comes, my children have the knowledge they need to make informed decisions.
Besides diseases like cystic fibrosis, health professionals are aware of many other illnesses that appear to run in families: cancer, diabetes, mental illness, stroke, and heart disease to name a few. As you collect death certificate do you collect the information about cause of death? You should collect information not only on your direct ancestors, but on all family members. If a specific cancer runs in your family what can you do to change your lifestyle to reduce your chances or what tests are available to catch a problem early? Can you identify certain environmental factors that may have played a part in the disease for an ancestor, such as working in a mine, or with asbestos?
As I’ve joked in the past, my family doesn’t have any interest in genealogy or family history, however when they’re looking for information, I’m the likely holder. My children are adults with careers that have moved them away from us. They have gone through the process of finding their own doctors and whenever they need to fill out a medical history form, I get a call. As I’ve moved to Florida this past year, I have also gone through the process of finding new
doctors. I originally created a medical pedigree for myself, and have now created one for each of my children. I’ve shared this information with both my sisters and discussed the information with my husband’s family. If you are the keeper of the records for your family, this is a gift. A medical pedigree uses different symbols and contains no names (for privacy). You add the known diseases with age at onset as well as death date and age at death for each individual. The age at onset can be important for diseases like breast cancer where early onset in multiple relatives is more likely to be genetic than late onset. If you are tracing a particular disease or trait, you shade those individuals. You add in the country of origin for immigrants since certain diseases are more likely to occur in certain ethnic groups.
If you didn’t get around to collecting the information over Thanksgiving, there’s still the December holidays. I’ve listed a couple of resources below for you to check out. The Surgeon Generals site not only has great information, but has an interactive tool to help you design your pedigree. The data is stored on your computer and if you want to update or change it, you can go back to the site and upload the information. Another great resource is Dr. Tom Shawker’s book. It’s a great time to get started.
Department of Health & Human Services, U.S. Surgeon General’s Family History Initiative
––––, My Family Health Portrait (Interactive Tool)
Shawker, Thomas H., M.D., Unlocking Your Genetic History, A Step-by-Step Guide to Discovering Your Family’s Medical and Genetic Heritage, National Genealogical Society, Rutledge Hill Press, Nashville, 2004.