In my first post, I shared my diagnosis. I also shared a little about my history with chronic pain/illness, and some of the feelings I have about it. Now, I’m going to back up a bit and talk about how I ended up here, with a diagnosis of EDS. I’d apologize for the chaos, but to be honest I can’t promise anything here will be in a chronology that makes sense. J (my husband), would be glad to reassure you that my thoughts, and even conversations aren’t always in logical order either. It’s just the way I roll.
It’s hard to know for sure where this story began. The type of EDS that I have been diagnosed with (Hypermobility Type) cannot yet be reliably identified through genetic testing. Additionally, EDS-HT can occur in a familial pattern (thought to be autosomal dominant), or as a random mutation. Either way, I had to “win the lottery” to come up with EDS. For these reasons (and because I think it will be fun), I’ll start before me, and even before my parents. Although I am going to spend a bit of time here exploring my family history, I’d like to make it clear that I do not blame any member of my family (or group of family members) for my EDS.
My father’s parents were incredible people. Their families journeyed to the US from what is presently Ukraine to escape religious persecution and start a new life in Cleveland, OH. They were of Ashkenazi Jewish descent, and grew up on the Yiddish their families brought with them, and the English they learned along the way. After my grandfather fought in WWII, they married and moved to Columbus, OH where they started the large (in size and love) family that I now proudly call myself a part of. Jewish people, and Ashkenazi Jews especially, tend to carry more genetic disease than other ethnic groups (Jewish Genetic Disease Consortium). This includes the possibility for EDS and dysautonomia, a related group of conditions. This side of my family has gifted me with so many things including pride in my heritage, empathy for others, and my crazy wavy hair. Along with those gifts, I take an increased risk for genetic disease, cancer, heart disease, autoimmune disease, and neurological disorders.
My mother’s mother is a vividly beautiful woman even to this day. She was born in Indiana, to a family that is largely of German descent. In addition to my blue eyes and my stubborn sense of self, I may have inherited joint difficulties and a tendency for autoimmune disease from this side of my family. Her daughter, is also incredibly beautiful, and an amazing mother who happens to be hypermobile with a history of headaches, Reynaud’s Phenomenon and GI difficulties.
The photo below is my very own genogram (NERD ALERT!!!). A genogram is a diagram that helps lay out familial lineage (including medical history). If there is information missing it is either intentionally left out to protect the privacy of my family members OR it is just information that I am unsure about; still piecing together. If you’re interested, you can build your own at Progeny Genetics.
Although it provides an interesting look at some of the proclivities I’ve mentioned about my family history (and some I didn’t), I can’t really be sure if the reason for my EDS lies in my genogram. Still, putting it together has been exercise that has helped me understand where I came from, and what I might be at risk for in the future. It’s something that I first saw at my geneticist’s office, and apparently it helped them too. That’s enough for me.
Disclaimer: I AM NOT A PHYSICIAN OR OTHER MEDICAL PROFESSIONAL. I am here to share my own experience, and hope that it is helpful to you, but will not provide any sort of medical advice. Please see your doctor if you feel you have come across something you would like to discuss.