This piece originally ran in my February 2008 newsletter. It is still 100% relevant and compelling. If you’ve never mapped the health history of your family, you can’t know what clues are waiting to be revealed.
I’m at work on an historical novel based on a branch of my ancestry, and one of my more heart-rending discoveries has been that of a family decimated by Huntington’s disease, a horrid affliction that close to 100% inherited. Huntington’s disease often eventually robs its victims of motor control and speech, and can lead to frightful psychosis. I cannot describe to you how deeply I feel, across more than half a century of time, this family’s panic and despair, watching one family member after another fall victim to a villainous illness at a time when treatments were minimal.
Meanwhile over at Thomas Edison High School, Bryce is writing a paper about autism for his health class. Specific questions must be answered. The first is: what is the cause? Because it’s a short paper, Bryce gives a short answer: we don’t know what causes autism. There are many different ways to have autism, and the cause is likely many different things.
Bryce is right; we don’t have a definitive, across-the-board answer. We each form our opinions according to what information makes sense to us, each in our own situation. But until we know a lot more than we know now, what makes sense is to pursue all logical possibilities.
One of the avenues worth pursuing is that hereditary link, so painfully demonstrated in my family with Huntington’s disease. This is where my devotion to the field of autism and my equally potent love of family history and genealogical sleuthing join forces. Many illnesses and disorders run in families. Discovering these patterns can profoundly influence the course of research, identification of risk factors, preventative measures and treatments.
The Surgeon General’s Office of the US Department of Health and Human Services has developed a tool to help you track, organize and share with your health providers this important information. My Family Health Portrait is an Internet program compatible with any current web browser, and is available in English, Spanish, Portuguese and Italian. It’s free and downloadable to your own computer.
I used My Family Heath Portrait to set up my own family health information. It’s easy to use and sets up good visuals, both in spreadsheet form and in family-tree style chart form. Seeing this kind of information presented visually is powerful. I had thought I knew most everything about my immediate family’s health, but the chart revealed a startling number of red flags where I had indicated “I don’t know.”
My Family Heath portrait is available at https://familyhistory.hhs.gov/