Washington Post Staff Writer
Tuesday, November 27, 2007 11:00 AM
President Lincoln's health has long fascinated medical historians, and now a California doctor has come up with a new theory after exhaustive research that, he argues, explains all of Lincoln's known features and symptoms. He concludes Lincoln had a rare genetic cancer syndrome that might have killed him within six months had he not been assassinated. Read more of the story: Is Lincoln Earliest Recorded Case of Rare Disease? (The Post, Nov. 26)
Join Washington Post staff writer David Brown and John G. Sotos, the author of this study, for an online discussion on Tuesday, Nov. 27 at 11 a.m. ET.
A transcript follows.
David Brown: Greetings fans of Abraham Lincoln, medical history, and retrospective diagnosis. We have an interesting subject today, namely the hypothesis that Lincoln had MEN 2B, a rare genetic cancer syndrome. We are lucky to have on the chat the author of the hypothesis, John G. Sotos, a physician and occasional author on topics of presidential health. Also the author of "Zebra Cards", for the medical students and residents in the audience. There are a lot of questions, so let's begin.
Washington, D.C.: Always enjoy reading about Lincoln since he's clearly a fascinating figure. But how many things are we going to diagnose him with more than a century after he died. First, it was depression and now this?
John G. Sotos: It will probably come up in another question, but I don't think Lincoln was depressed.
As for the number of diagnoses, they have actually been pretty limited in number. After Marfan syndrome was proposed in 1962, there has not been much more on the genetic front. There have been half-hearted proposals that he had Stickler syndrome and the MASS phenotype, but mostly the feeling has been "Marfan syndrome is kind of a stretch." By the way, MEN2B was not even been recognized as a disease until about 1965.
McLean, Va.: Do the findings of the Lincoln autopsy support any of the hypotheses about his health/medical condition? How thorough was the autopsy by today's standards? There is one story that the president's autopsy and embalming were carried out in a building on what is now known as Navy Hill (former Naval Medical Center)across from the State Dept. Is this true?
John G. Sotos: Lincoln's autopsy was limited to his brain. It was conducted in an upstairs room in the White House just hours after he died. I do not know for certain where he was embalmed, but I would have to guess it's a 99% chance that that, too, was done at the White House. I do not believe he was removed from the building until the formal ceremonies of his state funeral began.
Anonymous: Monday, November 26, 2007
To David Brown,
I enjoyed your article on Lincoln and MEN 2B, and it was wonderful to see my great-great-grandfather's mask of Lincoln in the Post today, but was disappointed that he was not credited for his work. His Life mask was a new approach to casting and it would have been nice. He, Clark Mills, had been credited with both his invention and art. This mask was done in 1865, two months before Lincol''s death, rather than 1860. Comparisons have been made between the 1860 mask by Leonard Volk and the Mills mask in 1865. Many have noted how much Lincoln had aged during the Civil War.
Diana R. Mears
David Brown: We got our information on the life mask in the paper from the National Portrait Gallery. Unfortunately, they sent the caption for the 1860 life mask, not the 1865 mask we published. And, as you point out, the later mask had a different maker from the earlier one. We corrected the date in today's paper, but neither the original caption or the correction names the maker, which we should have done. Sorry.
East Lansing, Mich.: The vast majority of causative mutations (in the RET protooncogene) of MEN 2b are limited. It is not problematic to test tissue samples for such mutations. Rather than pursuing publicity to a speculative theory, why is the proponent of this theory not trying to pursue testing?
John G. Sotos: It is easier for me to write than to test genes. :-)
Seriously, I think most people would agree that it would be irresponsible to run around testing tissues of famous people for all sorts of conditions willy-nilly. It makes more sense to lay out a reasoned justification for testing in each case.
It was not my intention to lay out a justification for testing, but the books will do that as a by-product.
David Brown: From my reporting it seems clear that holders of Lincoln biological material will need a very good case to be made before they offer up a specimen for testing. So for that reason, if no other, proposing the idea and seeing how it is viewed in the medical and historical worlds is, I think, the way to go, rather than to solicit materials for testing first.
Washington, D.C.: My granddaughter was diagnosed with MEN 2B when she was 11. She's now 17. Has had two surgeries to remove a cancerous thyroid and another cancerous tumor wrapped around her carotid artery. Her calcitonin levels have been pretty level for the last few years.
She's terribly underweight (65 pounds) and is now undergoing treatment for an eating disorder. But my question is: is there any relationship between MEN 2B and thinness and/or eating disorders?
John G. Sotos: Many persons with MEN2B are thin. Bone, muscle, and fat tissues are all involved in MEN2B, which produces -- in most, but not all, persons with the condition -- a tall thin build. I have not seen anything mentioned about eating disorders, but I was not looking for that in my reading.
Washington, D.C.: Did Lincoln have both Marfan and MEN 2B then?
John G. Sotos: My theory is that he had MEN2B only.
The disorders (MEN2B and Marfan syndrome) are similar, in that they both produce a typical body shape (tall, with long limbs). This is what led to the initial diagnosis of Marfan syndrome.
However, the disorders are different in important ways. Cancer is part of MEN2B, but not Marfan syndrome. Disorders of the heart, aorta, and eye are part of Marfan syndrome, but not MEN2B. I could not find good evidence that Lincoln had heart, aorta, or eye problems that are typical of Marfan syndrome.
Beijing, China: There is a worldwide consensus (even here in mainland China) that Lincoln was one of the greatest American presidents. In your opinions, if 19th century medicine had diagnosed young Lincoln as a victim of a constitutional defect that would lead to an early death from cancer, would he have been considered fit to run for president in the historical context of that era? Taking this to the 20th century context, would a 2008 American presidential candidate diagnosed with MEN2B be considered fit for presidency? Taking your answers to the above into consideration, can you comment on whether there should be public disclosure of "predictive" genetic disease liability for American presidential candidates?
John G. Sotos: The Constitution has only age, birth, and residency requirements for the President. There is nothing about medical fitness encoded in law.
The voters, in a sense, determine who is medically fit and who is not. But of course the voters can only decide on the basis of what they know. Thus, it is disquieting to me that there is no law compelling disclosure of significant medical conditions. It is especially ironic that *every* member of the US Armed Forces except the commander-in-chief has to undergo a physical examination before being allowed in.
The book has a chapter on this. It is tricky to define "significant medical conditions," but I believe there is a pretty straightforward way to do that.
Rockville, Md.: Are our presidents mostly old guys and not all that healthy? Or was it a mixed bunch?
John G. Sotos: Even the young ones -- John Kennedy -- were not so healthy!
I have been surprised at how much illness has afflicted the Presidents, and how little of it is generally appreciated. Just last week I saw a (serious) biography of George Washington talk about the dementia of his last years in office. Either Madison or Monroe had seizures while in office. Coolidge was so depressed after his son died that the whole tenor of his Presidency changed. Pierce was drinking heavily while President, after the grisly near-decapitation of his son, which he witnessed. And it goes on...
David Brown: On the other hand, the effort that must be expended now to run for president would make it very difficult for a person with a chronic, debilitating disease to be elected, in my opinion. Candidates must be able to perform at quite a high level after chronic sleep deprivation, irregular eating, lots of standing, little exercise, etc. I am frankly amazed at how well they stand up to the process.
Boston, Mass.: Is there any plan to study gentetic samples from any known relative of President Lincoln?
David Brown: Lincoln has no direct descendants alive. Robert Todd Lincoln had three children, but none of his grandchildren had children. The last direct Lincoln relative died in 1985. But even if there were living descendants, testing them would only be informative if Robert Todd Lincoln had evidence of having MEN 2B, inherited from his father. He lived to be 82 and it is very unlikely he could have lived that long and had the condition.
John G. Sotos: To the gentleman with the possible sample of fabric that has Lincoln's blood on it: Please contact David Brown at the Post and he will pass the information to me. Thank you very much.
Saint Inigoes, Md.: Is Lincoln's facial asymmetry consistent with a diagnosis of MEN 28?
John G. Sotos: I believe it is. An early article on MEN2B, written in the late 1960s, mentions facial asymmetry as one of the features of the condition. The article lists several cases where this was so. For some reason, recent articles do not talk about this feature. I have seen several published pictures of people with the condition in whom facial asymmetry is clearly noticeable. By the way, the asymmetry is really strikingly displayed in the picture of the head cast that the Post published. Notice that one ear is far higher than the other.
Baltimore, Md.: The story was fascinating, but I have to take issue with one of the supposed symptoms. It was written that Lincoln's prediliction for reclining might have been due to weak muscle tone. But the image of Lincoln as a young railsplitter who could handle hard physical labor effortlessly belies this. If Lincoln liked to lie down, perhaps it was due to age and the sheer stress of managing the Civil War.
John G. Sotos: This is an insightful question. It turns out that strength and tone are two different aspects of muscle. They are not necessarily related to each other -- as in Lincoln's case.
Yes, Lincoln was strong, but most of the time, when he was not splitting rails, his muscles were at a low level of activation (that is "tone"). This low-tone is part of MEN2B, although it is most noticeable during infancy.
The low tone is noticeable in Lincoln's tendency to "lounge" horizontally, and also in his gait. When he walked, his arms swung freely in a way that provoked comment from other people. The muscles of his face also had low muscle tone -- which is why he looked sad all the time.
Omaha, Neb.: Most Lincoln scholarship concerns battle plans, interpersonal relationships and election strategies. How would any genetic/biological data impact our understanding of those subjects? I was engaged in a similar study (diagnosing a historical figure with a particular illness) and the question I most commonly encountered was "why bother?" I am curious as to how you address this question. Thanks for your time.
John G. Sotos: The title of the book, "The Physical Lincoln," emphasizes the distinction with "The Mental Lincoln" which, as you note, is the usual focus of Lincoln studies.
There is some crosstalk, certainly, between the physical and the mental. I have not speculated in detail what those areas might have been.
As for the question, why bother? a flip answer would be "Why not?" People are interested in all sorts of things, not all of which affect our day-to-day lives or the stock market.
Although this will be an entertainment for most people, there are exceptions, none of which are compelling alone:
-- Lincoln shines a light on everything he touches, so the publicity around this disease will likely lead to a few people (or their relatives) realizing they have it. This could actually save lives, since early treatment is critically important in MEN2B
-- I think considering the questions of ill health in Presidential candidates, using the Lincoln example, is something that should be done. The Founding Fathers had no idea how to deal with disability, and we still have a way to go in removing that "bug" from our system of government.
-- This sort of discussion can have an effect on young people. A child who gets interested in this might eventually go to medical school and eventually take care of me when I am old and infirm. So, yes, it matters a lot.
Huntsville, Ala.: Good morning everyone,
Our family has been traced back to Lincoln's mother. My question is -- could this condition be hereditary? If so, this may explain much!
John G. Sotos: You have been traced to a *branch* of the Lincoln family. He has no direct descendants living. I did not find evidence that anyone in the family, other than his children and possibly his mother, had MEN2B.
Chestnut Hill, Mass. Patients with rare diseases today often find that their diagnoses are missed by many doctors and they are on a "diagnostic odyssey" for many years. If a patient with MEN2B showed up in a doctor's office today and they were not the president of the United States, would they be likely to face a diagnostic odyssey?
Michael Segal MD PhD
Dr. Segal is founder of www.SimulConsult.com, a diagnostic decision support software company.
David Brown: A young person who presented to a physician with lumps in thyroid gland or elsewhere in the neck would probably get them biopsied. If they came back from the pathologist with the diagnosis "medullary thyroid cancer" I think most doctors would seriously consider MEN 2A or 2B, which could then be confirmed or ruled out with a genetic test. Of course, if someone came in not with one of the characteristic cancers but only with some of the characteristic physical features, it would be much less likely the diagnosis would be made, in my opinion.
John G. Sotos: Because of the unusual facial features (the lips) this is a particularly easy disease to diagnose -- but only if the physician knows about it. A DNA test can seal the diagnosis in quick order, in most cases.
Thus, whether or not a diagnostic odyssey results depends on the knowledge of the physician. It is usually the case that people with less-than-textbook manifestations of the disease are the ones who go on the odyssey.
It's not quite fair to say that Lincoln would have been difficult to diagnose in person. A physician today would hopefully feel his thyroid gland -- and the cancerous lumps in it. So, even a physician who did not know about MEN2B would have been tipped off that something was wrong. Lincoln's weight loss would have been another tip off to cancer.
Richmond, Va.: Lincoln wasn't depressed? Wasn't there like a book and a History Channel special devoted to just that idea?
John G. Sotos: OK, let me tackle the depression issue. There was indeed a book on this. The author finds two major episodes of depression in Lincoln's life.
The first was in connection with the death of Lincoln's near-fiancee, Ann Rutledge. (This is a hugely controversial point with historians -- please don't flame me about it.) Anyway, Lincoln also had malaria at this time. He was taking "heroic" doses of quinine and other medicines. I do not believe it is possible to know how much of his misery at this time was due to malaria, to medicines, or to the death of Rutledge.
The second incident was in connection with his break-up with Mary Todd. This is also controversial.
The additional evidence for depression is Lincoln's apparent sadness at all times. However, many people note that Lincoln could look like the saddest man in the world one moment and be laughing uproariously at a story the next moment. Depressed people do not do this, in general. Their mood is low uninterruptedly.
Now MEN2B enters the picture. Low muscle tone -- a sometime consequence of MEN2B -- can lead to the appearance of a sad face. Recall that a sad face is nothing but a face that has surrendered to gravity -- all the muscles sag -- there is no energy in the face.
I believe, therefore, that Lincoln's mood could not be read from his facial expression. It may well have been true that Lincoln was depressed on occasion, but I do not believe that any instance can be used to support this contention if Lincoln's mood was read from his face. He just wasn't like you and me in that regard.
There are eyewitnesses who say "Lincoln was never quite as sad as he looked." I think that's a very telling statement.
Burke, Va.: Any chance that some of Lincoln's bio material will be allowed to be consumed to verify your assumption?
David Brown: Well, that's the $64 question. It will take time for this hypothesis to get around and for people holding the biological material to consider whether getting an answer is worth loss or damage to one of their relics. Because many of these materials have been handled by numerous people over more than a century, it is very likely that more than one person's DNA would be recoverable from many of them. This might be less true for the bone, which might have cellular material in the interior that was uncontaminated and recoverable. In order to be confident the material was Lincoln's, it would probably be best if several samples that had been held by different people or institutions were tested simultaneously. There would obviously have to be a lot of thought on how to do such testing with maximum efficiency, minimum consumption of material, and the greatest possible chance of getting a believable answer.
John G. Sotos: I agree with David. "Allow" is up to the owner of each piece of Lincoln tissue. The Post story emphasizes that there are lots of such owners.
I would also note that it only takes one "hit" to prove the MEN2B hypothesis. In other words, if, say, four people volunteer material, and only one of them shows the MEN2B variant in DNA, I would say that proves the hypothesis, because the MEN2B variant is so rare in the population that it's very unlikely that it was added as a contaminant.
Washington, D.C.: President Lincoln had tremendous strength as a young man, and was able to hold an axe at arm's length longer than anyone who challenged him. How does this fit into your equation?
John G. Sotos: This is the distinction between muscle strength and muscle tone. They are separately controlled aspects of muscle.
Adult neurologists say, for example, that people with cerebellar ataxia can have normal strength, but have low muscle tone.
It should be noted that Lincoln's boyhood chums describe him as physically lazy. One says --colorfully-- that he was always one to duck out of work like killing snakes.
Lincoln himself downplayed the role of strength in his accomplishments. He explained his wrestling technique: He would give his opponent a sharp shove to the shoulder (which , because of his long arms, he could do from quite a distance) and knock the opponent down that way. He also explained that his long arms gave him advantages in throwing a ball and other sports. People who describe Lincoln's muscles never describe his as muscular or large muscled. They describe him as "wiry" or "sinewy." By contrast, Lincoln's father (who certainly did not have MEN2B) was described as muscular, in that very word.
MEN2B (i.e. the "marfanoid build" that goes along with the disease) would be expected to produce just this type of thin, wiry muscles.
Virginia Beach, Va.: MEN2B is sometimes associated with a slipped capital femoral epiphysis, usually manifested during childhood. Did Lincoln have problems with a painful gait?
John G. Sotos: A part of the Marfan syndrome is "protrusio acetabulae" -- which is a wearing away of the hip socket. Or at least that's my current understanding of it -- I have not really looked into it.
I saw no complaints of hip pain from Lincoln, or of interference with walking, but then again, Lincoln was not a complainer. I don't think we'd have heard about it even if he did have it.
Hunt Valley, Md.: This is a complete aside, but did you get any inspiration on this story from the 2003 series of articles on FDR -- that he may not have had polio at all, instead he probably suffered from Guillain-Barre syndrome? I find that almost as fascinating as Lincoln. Of course with Lincoln, you can test his remains to see if he suffered from MEN2B, but with FDR, we'll probably never know.
John G. Sotos: I've looked into FDR and the Guillain-Barre hypothesis. I don't believe it. There are several features of FDR's illness that are classic for polio, but not present in GBS, that were overlooked. I have a half-written article on this. :-)
Arlington, Va.: Are individuals with this condition more prone to illness and early death? I notice in pictures of Lincoln's sons that two had physical body types similiar to their father (though it is difficult to tell because they died young)the other two including Robert who lived to adulthood were built more like their mother, more stout and short. The two who died early in life (due to major illnesses)possibly inherited the traits of their father and therefore were more prone to the diseases of the day. Those built more like their mother (hearty stock) may have had better resistance. Any thoughts on this?
David Brown: People with MEN 2B are definitely prone to illness and early death, which is why Lincoln's longevity (he died at 56) is a major datum against this hypothesis. People with MEN 2B do live that long untreated, but they are the exceptions, not the rule. It is interesting to note that several people said Robert Todd Lincoln was "all Todd and no Lincoln", a description of both his physical appearance and, in the view of some, his personality as well.
David Brown: Our hour is up. I realize there are some unanswered questions. Sorry about that, but we have to go. Dr. Sotos's book will be available through the website physical-lincoln.com in the first week of December.
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