Tracking HD Using My Family Tree

Illustration showing different family members in a family tree
Retrieved from: https://familytreemagazine.com/general-genealogy/10-steps-to-start/

One hobby of mine that I work on in my spare time is genealogy. Genealogy is the study of family history and family trees. You can find so much information using Ancestry [some libraries you can get access for free] or even a simple google search.

I have been working on my family tree for a few years and recently, I had a thought - could I use my family tree to potentially track Huntington's disease to earlier generations? I had previously mentioned the idea to my neurologist and he thought it could be feasible!

With some research I came up with a somewhat algorithm to come to an "assumption"  as to whether or not an ancestor may or may not of had Huntington's. As genetic testing wasn't available until 1997, this was some what difficult.

To maintain my family tree, I use My Heritage and their family tree builder.  I also use Ancestry Library Edition to find records - marriage certificates, censuses, and so much more is available. Ancestry Library Edition is usually available for free at your local library.

Now - how do I make an assumption as to whether or not an ancestor had Huntington's? I am going to use my Great Grandmother and Great Grandfather as examples.

First, I usually base my assumption on where and when did the person die. My great grandfather passed in 1965 at 62 years old in St Thomas Ontario. My great grandmother passed in 2013 at 99 years old in Tillsonburg Ontario. From my records, my great  grandmother never lived in St. Thomas, and there was a large psychiatric hospital in St. Thomas when my great grandfather passed. 

My next step is usually looking into the archives local to where ever the person passed. They might have available information about the funeral or access to old newspapers that might contain obituaries. For my great grandfather, I was able to reach out to the Oxford County Library, who maintains archives for Oxford County, Ontario. They were able to send a scanned microfilm of my great grandfather's obituary posted in a 1965 issue of Tillsonburg News - this is how I found out when and where he had passed away.

May be an image of text
Great Grandfather's Obituary from 1965
Courtesy of Oxford County Library/Tillsonburg News		  

 Finding out that my great grandfather passed in St. Thomas gave me a theory - if he did have Huntington's, could he have been a patient at the St. Thomas Psychiatric Hospital? With a quick google search, I learned that records pertaining to the St. Thomas Psychiatric Hospital were maintained by the Ontario Provincial Archives. I reached out to them asking if there was any record of my great grandfather being a patient? I  am still waiting to hear back. 

One of my last steps is obtaining death certificates. In Ontario, a death certificate only costs $22. I applied for my great grandfathers last week, and may be waiting for a month to receive a copy. It will list cause of death, date of death, place of death, and various other information that would be useful. 

Now, how do I keep records of all of this? 

 First, My Heritage has a section on a family members or family unit's profile. This is an example of a note for my mom, who was confirmed to have Huntington's.
Conf. Huntington's -father confirmed and son confirmed.
Now for my great grandfather who I presumed had Huntington's has a note like this.
Poss. Huntington's-age @ death, son w HD
The notes are short and sweet and allow me to quickly summarize and reference the data that led to the assumption.

To display all of this, I refer back to the genetics unit in grade 12 biology class and my bio teacher Mrs. Kennedy - I brought the genetic pedigree back! I made one to highlight who has and doesn't have the genetic mutation that causes Huntington's - I used an online resource called QuickPed to make a genetic pedigree that is below.

In the genetic pedigree,I am the left most black square on the fifth row from the top. A square represents a male, and a circle represents a female. A line through a symbol means that the person is deceased. A striped symbol means I made the assumption that the person had Huntington's, and a dashed border means I don't have enough data yet to make an assumption.

I think its quite interesting to see how far back I can track Huntington's and see how things have changed over time. As I go further back, I will most likely do an update. Thanks for reading!

Acknowledgements

Matthew Griffis @ Oxford County Library for providing the Tillsonburg News columns

SDG Library for access to Ancestry Library Edition

Local Libraries - one of the most helpful resources! 

My Heritage for their online resources and Family Tree Builder

Quick Ped for their online genetic pedigree maker

 

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