What’s your real family medical history?
I’ve been collecting family medical history information almost for as long as I’ve been doing genealogy. My genealogy program doesn’t specifically have a field for a cause of death, so I haven’t really known how to move forward with it the documentation of it. The information is in my notes somewhere. But as I’ve recently figured out, finding out the cause of death on a death certificate does not necessarily mean you’ve identified the entire health history.
My mother’s cause of death is listed as ‘unspecified natural causes’. However, it was as a direct result of having an inoperable brain tumor. They attempted to remove it with an experimental gamma knife treatment (laser) but damaged the brain stem in the attempt. Nor was there a listing of ‘due to or as a consequence of’. So it is deceptive to assume that ‘natural causes’ has anything to do with what was really going on.
Anyway, I’ve been collecting family information. We have several heart conditions (including heart attacks and surgery), multiple cancers (some people have 3 or 4 different kinds of cancer yet lived to a good age), and multiple cases of diabetes.
Yet in spite of my diligence (or so I’ve told myself), I was completely caught off guard during a recent cousin reunion. One cousin had had her thyroid removed, one was on medication, their mother was on medication, several aunts had had theirs removed, and several other cousins had had surgery or were on medication, and one nephew had had thyroid cancer. In the last year, my daughter had half of hers removed. These are just the ones we know about.
It never occurred to me that it was a family-related issue. Now I need to ensure that my other daughter and I get checked and keep an eye out for that condition. Thyroid issues can cause a multitude of conditions and if untreated, can result in death.
In addition, my daughters need to keep an eye on a condition that their grandmother had and eventually died from called hemochromatosis. It is one of those conditions diagnosed late in life when it is too late to do anything about it.
“Hemochromatosis is a disorder in which the body stores too much iron. The body has no way to remove the extra iron, so it stores it in the joints and organs — especially the liver, heart, and pancreas. The organs cannot manage the overload of iron, and so they can be damaged and may eventually fail. In many cases, however, iron overload is the result of a hereditary disorder, which means it is passed down from parents to children through their genes.”
One of my daughters has been tested and has only half of the required genes to develop the disease. The other daughter is now aware and will be testing her own children, my grandchildren.
I’m urging everyone to take a broader view of family medical history and record known conditions as well as causes of death and contributing factors.
Why Create a Family Health History
This Creating a Family Health History website talks about reasons you may want to collect a family health history.
How To Create a Family Health History
This How To Create a Family Health History website tells how to go about creating a family health history, including what questions to ask.
Printing a Family Health History
This Printing a Family Health History website allows you to create a family history online and then print it out.
“The online version of ‘My Family Health Portrait’ seen here will organize your information into a chart that resembles a family health history tree. Information that you submit to the online version of ‘My Family Health Portrait’ stays private. It is not shared with the government or anyone else. It is best to gather information about your family health history beforehand so that you will have it easily available when you need to enter it.
You can also use ‘My Family Health Portrait’ to calculate disease risk based on your family history for certain common disorders like diabetes and colorectal cancer.”
These additional websites may give further insight on creating a family medical history.
Family Health History Portrait Tool
Tracing Your Health History: It’s In Your Genes
Sources for thyroid and hemochromatosis:
Understanding Thyroid Problems
Risk Factors for Thyroid Disease
Excellent post Susie! My mother recently was asked by her doctor for the cause of death for her parents and grandparents. There’s a history of breast cancer in my family so we’re all hyper aware of that, but there could be others. I was thankful I had the death certificates for most of mom’s ancestors, although we have to just go with what they say as folks didn’t talk about that much back then and most had passed before Mom was born.
Which genealogy program do you use? Most programs have the ability for custom fields, so you may want to add cause of death or health issues. Would be interesting to run reports on that!
Looking forward to reading more!
~R
Rebekah, thanks so much for stopping by. It’s the sneaky stuff that’s not on the death certificate that makes me wonder. I use Roots Magic. I believe they do have the ability to add fields. Now I find myself looking at ‘starting over’ by adding a field and entering new information for everyone. I’ll put it on my to-do list. ha.