It is not entirely my fault. A good friend asked me to look a couple things up for her. Like me, her family is horrendous at sharing accurate information and like many of us 40-somethings, our parents don't seem to think the details like cause of death, medical history or genetics are important bits of information to share. My own mother has changed health stories many times. I heard her tell someone last week that I had gestational diabetes.
This simply isn't true; I had preeclampsia. And the truth matters--it matters to me and it matters to my children and my future descendants.
(I think it is exciting to think about having descendants! It's a piece of me could live forever and really it's all very Highlander, like, you know? Like we all have inside us the blood of kings? If you don't know what I am talking about after you've finished reading Yoke and shared it with no less than 10 people, go research the classic series Highlander and then circle back and let me know how exciting it is to be an immortal, minus the head chopping off bit).
Anyway, back to the matter at hand: health histories.
Friends, you need to know your family's health history. It is critical for the health of yourself and future generations. It is not something that should be left to guesswork or posturing or even having your crazy, stalker friend with an Ancestry.com account search for death certificates.
Like for example: preeclampsia is a rare disorder in pregnancy. There is some evidence it could be inherited. I've asked and asked my family if anyone experienced it in pregnancy: the answer is always "I never heard about it," which isn't an answer. For my kids, they need to know that preeclampsia happened to their mother so when they have children (even Nicholas!) they can share that health history with their (or their partner's) doctors.
I don't want them to be scared; but I want them to be empowered. Even Lily's history of ependymoma, a rare pediatric brain tumor. While there is no current evidence that whatever mutation caused her tumor is inherited and thus far we have not been tested for a cancer predisposition syndrome, including her health history in all of our health histories is important for us and important for the future.
My first cousin's daughter had leukemia. On the other side of the family, rumor has it I have a first cousin who died in childhood (in 1964, still my first cousin, but there is some time distance between us) from some sort of sarcoma. His father, my uncle George, died from maybe a spinal tumor. These are mysteries I want to unravel--because who knows what they mean for the health of future generations. Maybe these are flukes or maybe they are clues to underlying conditions.
So much is unknown in medical science and at the same time, new discoveries are made everyday.
Today (in between Ancestry and being professional!), I spoke with Dr. Katrin Erickson, a researcher who is studying RUNX-1-FPD. This is a mutation that can drive the development of blood cancer in children, young adults and older populations. Dr. Erickson shared so much about their mission to prevent cancer--and so much of the work they do is empowered by knowledge. And this isn't just scientific knowledge, this is the knowledge of health histories and conditions that real people bring to their clinicians that could indicate the need for genetic testing for RUNX-1-FPD.
So, friends, my unsolicited advice of the day is to interview your parents and your grandparents and your siblings and your cousins about their health history; write it down. Text me if you need a deep dive into death certificates if your sources are untrustworthy. Tell your children; remind your children; tell your doctor and take these stories seriously.
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