First of all, it is Marfan syndrome, not “Marfan’s”: a medical condition has an apostrophe s at the end if it is named for the original or most famous patient–e.g., “Lou Gehrig’s
Diseaes,” versus named after the discoverer: “Marfan syndrome”; “Asperger syndrome.”
Secondly, I don’t see the reason this test should not be done. It’s valid historical research, if nothing else, no different than any other historical research. The idea that it might harm a pillow at a museum is silly. We live in a culture that kills babies in the name of medical research, saying that moral considerations should not impede the advancement of science, and, in the “Lincoln issue,” people say it’s unethical to test the DNA of a guy who’s been dead for 140+ years because his son, who’s been dead for almost as long, said not to.
As a Marfan, I see the value in such research. Lincoln is one of our biggest claims to fame. Most people, if they hear “Marfan syndrome,” think “Abraham Lincoln.”
We’re one of the most common rare disorders, but we get no publicity. Lincoln’s about it.
Several years ago, I bought what I call my “Marfan pride” T-Shirt from the NMF. It says "LINCOLN . . . " lists a bunch of historical figures believed to be Marfs, finishes with “King Tut’s Old Man . . . and ME!”
Unfortunately, the cases that each of these people (including Charles de Gaulle and Mary Queen of Scots) had Marfan are tenuous. Pharoah Akhenaten is a pretty good call, given the historical evidence. Rachmaninoff had hypermobility, disproportionately long limbs an digits, vision problems and severe headaches (possibly caused by his vision and/or a brain aneurysm). And he died prematurely. Paganini is almost definite, esp. because doctors did evaluate him in his lifetime for his amazing musical abilities and strange physique. He was the only one who actually showed symptoms of an advanced aortic aneurysm.
But how many people know Paganini or Rachmaninoff?
That said, I’ve always figured, if Lincoln did have Marfan syndrome, it hardly debilitated him, and it hardly killed him at a young age.
Lincoln definitely had something. The deaths of most of his immediate family, plus his own chronic health problems, indicate it. He definitely had a cardiological or neurological defect (there were issues with taking his photograph, given the technology of the day, because you had to be perfectly still for like a half an hour, and Lincoln was always having spasms).
As much as I’d like him to be proven a Marf, I’ve never really seen the case for it, and the symptoms are much more matched by the other diagnosis, the one that the surviving descendents of his closest relatives have.
But whatever his health problem was, diagnosing it would be a huge boon for the treatment of that disease: raising awareness, generating research dollars, giving those who suffer it a hero, and giving the disease a name. Do you know how many people’s lives are saved by such awareness? Both the public learning about the disease to recognize its symptoms in themselves or loved ones, and in family members?
Certainly, when I was a kid, the idea that Lincoln was a Marfan was a huge motivator and inspiration for me.
I mean, it’s only been in the last few years that I haven’t had to give a dissertation on Marfan syndrome every time I enter the emergency room. It’s finally gotten to the point where every ER doctor I encoutner ,and most nurses, are aware of the many risks I face as an adult, post-operative Marfan.
I mean, we don’t get “celebrities”. Most of our celebrities, like Flo Hyman and Jonathan Larson, get diagnosed posthumously.
Conversation of my co-workers when the Rent movie came out:
Airhead Co-Worker: "He died of AIDS, right?"
Smart Co-Worker: "No. He died of Marfan syndrome."
Airhead Co-Worker: "What’s that?"
Smart co-Worker: "That’s what John has."
Airhead Co-Worker: "Oh–"changed subject.
Those who do achieve success despite Marfan syndrome, like Rabbi Gehlman of The God Squad, Vincent Schiavelli (who ended up dying of lung cancer, not Marfan), and the hypothetical Lincoln, don’t really give examples of how debilitating and life-threatening it is.
Awareness-raising is so important for so many reasons. There are a myriad of valuable reasons why this should be done. Yet for historians, it’s just a historical puzzle. Doctors don’t see the direct viability in research. It’s only us activists who have a true stake in it.