Wednesday, January 9, 2013

Pursuing Health in Your Genealogical Record


Most of us enjoy the challenge of discovering our genealogical roots because we have an overarching hunger to know who our ancestors were. We are, after all, a combination of the traits and tendencies embedded in the genes of all those family members who went before us.

Though we often repeat that concept, though, not many of us research our family history with the express purpose of discovering our medical propensities. We may be curious about some of our physical attributes—where did those hazel eyes come from, anyhow?—but we often bypass questions that could, in the long term, have more impact on our own life.

With a family like the Bean family I’ve been writing about—and the related Woodworth line, as I’ll explain in a few days—the case is drastically different. Long before anyone knew there was such a thing as Marfan syndrome (first documented in 1896 by French pediatrician Antoine Marfan), someone in the Woodworth family line introduced it into the Bean family. Within a generation, whether the general public had heard anything about the syndrome or not, the extended Bean-Woodworth family had become painfully aware of its devastation.

Since I started this series on the Bean family, we’ve engaged in some conversation about this syndrome. Unless you have followed basketball or volleyball for a long time—and thus remember the mystifying stories of players unexpectedly passing out, right on the court—you have probably had no occasion to learn much about the malady.


Invisible, Yet So Obvious

One of the things I found so difficult to deal with in coping with Marfan syndrome was the reaction of other people to the dire medical issues that could crop up, unexpectedly. What presents to other people as a perfectly healthy young person may actually be, internally, a ticking time bomb, just waiting to explode. That is the legacy of the damage caused by Marfan’s to the cardiovascular system.

On the other hand, the hallmark of the syndrome is the incredible height of the subject, in addition to the rather elongated, thin appearance. “Long” and “thin” are two common words used to describe everything from facial features to hands and feet of the Marfan’s victim. It is as if the syndrome’s name is spray-painted over the physique of each patient like scrawled tags in graffiti. How could the casual bystander miss something as obvious as that?

Such telltale signs generally made it easier to track the “progress” of the offending gene through the family lines, as long as I had photographs. In this particular family, at least, often the bearers of the syndrome would make light of their height—you’ve already seen the photo of Earle Bean and his wife, Marilyn; Earle’s son Greg, years later, had his own version of the photographic jest, as you can see above. Greg’s aunt Belle, who married into the Woodworth line, had a number of sons with the same affliction, yet with their sense of humor, they managed to produce a few photographic chuckles of their own, including a line-up with their petite mom where she stood, eye level to her children’s belt buckles.

Granted, there are other health situations that researchers try to pursue in reconstructing their family health history which are not so visible. One reader, Heather Rojo, commented on researching diabetes in her family line—another health issue that we often encounter in medical questions at the doctor’s office. “Any of your parents have this illness? What about grandparents?” We often hear these questions aimed at us when we visit our own doctor; as family history researchers, we are equipped to pursue those answers ahead of time.


Striking the Well-Known and the Not-So-Famous

As “Intense Guy,” another reader at A Family Tapestry, mentioned in some comments, there are quite a few famous people who have had Marfan syndrome. Of course, simply being tall is not a qualifier for this category. There is so much more that goes into the diagnosis. So discard any notions you might have about your favorite extra-tall TV monster. Or movie elf.

Taking a look at one website’s listing of celebrities with Marfan syndrome, it was interesting to compare notes to that of the Bean family’s experiences. There were some mentions of “ruptured aortic aneurysm caused by Marfan syndrome.” That is the technical term for the very episode experienced by brothers Sam and Earle Bean, and a generation later (though thankfully after medical advances provided remedies for such dire circumstances) by Earle’s son, Greg. By that very token, as we research these medical diagnoses through the generations, we must also, by definition, become aware of the progress in medical history relative to the specific disease we are researching—and run concurrent timelines through our families’ histories. The diagnoses—and treatment regiments—of a century ago are thankfully not the protocol of our current decade, but it helps in genealogical documentation to be aware of these changes and even nuances in medical history.

As we read the accounts of others who have suffered from the same disorder—whether the life stories of the famous, or the oral traditions passed down by our own families—we can’t help but compare notes. For instance, after all I’ve experienced with the Bean and Woodworth families concerning this syndrome, I still tend to call it “Marfan’s” rather than Marfan syndrome, because that was what it was first called by the heart surgeon who spoke with family the night of that unexpected initial event that sought to claim Greg’s life. I also noticed, in the official-looking listing of symptoms at the National Institutes of Health’s PubMed Health website, a mention of “learning disability,” which turns out to be diametrically opposed to my own experience in knowing those several family members who were confirmed Marfan syndrome patients. You will also have your own observations as you engage in this research endeavor with your own family lines. While you may not feel like you are the medical expert, write down your own observations. These notes will also, someday, become part of your family medical history’s narrative.
  

8 comments:

  1. Jacqi,

    I wanted to let you know that I've nominated your blog for the "Blog Of The Year 2012" Award. Here's the link ~ http://janasgenealogyandfamilyhistory.blogspot.com/2013/01/three-blog-awards-kindly-given.html

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    1. Jana, my belated thanks for thinking of me and for this nomination!

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  2. This blog would be very worthy of "Blog of the Year".

    Not specifically related to Marfan's - medical history is a key component of diagnosing health issues. A family history, while not "proof" of a condition, can definitely shine a light on "what might it be?" when one is ill. Knowing your "genes" and your ancestors medical troubles is a valuable thing to have.

    Of course, that said, knowing one has a "gene" that pre-disposes one to syndromes like Marfan's doesn't not mean "not loving" any soulmate one might be blessed to share one life with - and in many cases it doesn't even slow down "true love." I suspect this is how it should be.

    My brothers and I are all severely hearing-impaired (and nearly deaf). Our condition is cause by a recessive gene that only the "accident" of our parents union caused it to rear its head. The signs of the gene are subtle (a wisp streak of grey hair on one head, even at an early age, is one). None of us consider ourselves "impaired" or "handicapped", nor would we trade either parent for anyone in the entire world for anything. Their love outweighs the deafness and hodgepodge of other genetic issues (like diabetes).

    I have a very extensive "medical history" and it goes back to my great-great-grandparents. Just knowing what we might be now (or later) dealing with - will be of great help. Thankfully the family tree guy in my family (my first cousin, three times removed, Franklin) recorded all this information for "his" posterity.

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    1. Iggy, Greg had often said that very thing about his own condition--even though he knew it would eventually kill him at an early age. When love comes first, those genetics do come in a far second, as you say.

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  3. You are bringing to light a little known health issue.. I have never heard of Marfan Syndrome before. It has touched your family in so many ways..it is good that you can write about it and Greg..although sometimes it must be painful. Thanks always for sharing! :

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    1. Thanks, Far Side. It's my hope that many more will become aware of this syndrome.

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  4. Jacqi, I have nominated you for a Wonderful Team Member Readership Award. Here's the link: http://bit.ly/UXG7Yc

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    1. Thank you, Mariann! That is such an honor.

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