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The famous dead yield only murky diagnoses

Sun Staff

The claims are everywhere: on posters and T-shirts, on the Internet and inbooks, even sometimes headlining the national news. Thomas Jefferson'seccentricities were actually a form of autism. Albert Einstein's geniusflourished despite a learning disability. And Winston Churchill overcame astutter and later suffered from Alzheimer's disease.

The conclusions, made many years after the deaths of these famous men, grabthe public's attention, inspire today's patients and bring in money forresearch and advocacy. There's only one problem: Often, the diagnoses arewrong.

"It's a lie. It's like saying to somebody, `Churchill overcame this;therefore you can.' Maybe you can, but it shouldn't be a lie, or amisrepresentation," said Dr. John Mather, a Washington physician who hasdebunked several medical myths about Churchill. "It's a matter offorthrightness and accuracy."

The roll call of historic disease sufferers seems endless: Hans Christian Andersen was supposed to be dyslexic. Marie Curie may have had a form ofautism. Frederick Chopin could have suffered from cystic fibrosis. SergeiRachmaninoff may have had Marfan syndrome.

Scholars, physicians and history buffs have always been fascinated by themedical stories behind famous people. The connections are also compelling tothe public, who feel they know these figures. At the University of Maryland Medical Center, doctors have been doing post-mortems on historical figures fora decade, and they have grabbed headlines and worldwide attention.

"There's something very powerful about this, particularly for people whodon't have any direct experience with the disease," said David Shenk, anauthor who recently spent time examining similar claims for his book onAlzheimer's, The Forgetting. After extensive work, he concluded Churchilldidn't have the condition. Said Shenk: "It's so easy to be reckless aboutthis."

Those who make these retrospective diagnoses, sometimes called"pathographies," say they have researched biographies and other evidence. Buthistorians say old records can be scanty and unreliable. Few if anycontemporaries are alive to speak for the dead. And most of the time, thebodies can't be examined.

Yet plenty of people are publicizing their spin on history.

The Stuttering Foundation of America ran a full-page ad in a May issue ofthe Journal of the American Medical Association, with a photo of Churchill andthis headline: "The voice of freedom never faltered, even though itstuttered." The foundation cites five sources, all dated before 1975, makingreferences varying from a "slight stutter" to a "stutter that took him yearsto overcome." Mather and others say Churchill never had a stutter; they pointto tapes of his speeches and a medical evaluation that show Churchill simplyhad a lisp on his s's and p's.

Likewise, a color poster of six accomplished figures from history,including Andersen, Churchill, Thomas Edison and Einstein, highlights them aspeople who had learning disabilities and managed to succeed. Created almost 20years ago by the Hill School in Fort Worth, Texas, the poster has gone intoits third printing and is hanging in 41 states and 13 countries. LucilleHelton, the school's former principal, said a committee, looking for famousfigures to inspire children, found the information in the local library.

But experts who have closely studied the lives of these men say there islittle or no evidence that four of them had a learning disability. ThomasEdison got kicked out of school for not paying attention and later had ahearing problem, but historians say there isn't any proof that he had alearning disability. Similarly, besides speaking later than most children,Einstein never revealed in his schoolwork or voluminous writings problemsconsistent with a learning disability, experts say.

"Something that can't be proved is taken very blithely as fact," saidMarlin Thomas, an expert in learning disabilities at Iona College whopublished an analysis of the claim about Einstein. Thomas became curious whenhe saw the diagnosis showcased on T-shirts, Web sites, ads and even brochuresfrom the American Academy of Pediatrics.

Two years ago, Danish researchers published an analysis of Andersen'sletters, poems and diaries and concluded a long-standing claim that Andersenwas dyslexic was wrong.

It's unclear where the rumor started that Churchill had Alzheimer's. Butthe connection circulated enough that recently, when Charlton Heston announcedhe had the degenerative disease, ABC's World News Tonight and Fox televisionnamed the former British prime minister as another prominent person who diedwith the condition.

Celebrity advocates

In a celebrity-driven culture, the strategy is a popular public relationstool. Pharmaceutical companies are increasingly hiring stars with healthproblems, such as actress Kathleen Turner and skater Dorothy Hamill, topromote medicines. Patient advocacy groups post names of prominent patients onWeb sites such as "Famous Texans with Disabilities," "Famous People withAsthma," and a quiz that matches celebrities with their disorders.

"It's just one of the pitiful facts of our society that you have to have afamous person to get the attention," said Abbey Meyers, president of theNational Organization for Rare Disorders.

But those who have advanced some of these connections say they have donetheir homework, closely reading biographies and looking for symptoms andpatterns. Jane Fraser, the Stuttering Foundation's president, said Churchill'sstutter wasn't always evident because he memorized his speeches.

"I think he [Mather] doesn't have an in-depth understanding of stuttering,"Fraser said. "And I think by denying that Churchill stuttered, he's trying toturn it into something to be ashamed of."

Norm Ledgin, a former educator and newspaper editor, has written aboutfamous people with autism. The Kansas man was reading biographies of Jeffersonwhen he began to notice dozens of traits consistent with a rare form ofautism, Asperger's syndrome, that Ledgin's teen-age son has. Ledgin wound upwriting a book detailing the connection, called Diagnosing Jefferson.

Wanting to encourage and inspire young people with autism and theirparents, Ledgin published a follow-up book this year that described otherfamous characters who he says most likely had a form of autism, includingCurie, Charles Darwin and Einstein.

"I've done it with people who can't defend themselves against me, but I'velooked very closely at their childhoods. I based it on what their biographerssaid," said Ledgin, who has spoken about his book around the country. Parentsand children with various forms of autism have said the book turned theirlives around.

Seeing is believing

But physicians and others expert at diagnosing these types of disorders,like Dr. Rebecca Landa, director of the autism center at the Kennedy Krieger Institute, say seeing and questioning the patient in person is critical.

In a few cases, scientists can examine bits of hair or other evidence tosolve an old medical mystery. Researchers are testing President Abraham Lincoln's DNA to determine whether he had Marfan syndrome. Other figures havesparked debates that may never be settled.

Scholars have advanced several theories about Joan of Arc, includingepilepsy, tuberculosis and psychiatric disorders. Others have argued over themaladies that ailed Vincent van Gogh, explaining them as migraines, epilepsyand bipolar disorder.

Historians worry that some of the people making these diagnoses after thefact have preconceived ideas of what to look for.

"Jefferson is such a complex and varied personality, that you can pull outany strands to support what you want," said J. Jefferson Looney, editor of ThePapers of Thomas Jefferson: Retirement Series, referring to the diagnosis ofautism.

Interpretations

Ultimately, like much of history, it boils down to how one interprets theevidence. And using the facts selectively can lead to the wrong conclusion.

If these conclusions are new or unusual, they're much more likely to getattention in the news media. In the case of Edgar Allan Poe, scholars had saidfor years that the writer died from chronic alcoholism. When doctors at theUniversity of Maryland Medical Center decided to review the case as anexercise, they offered a new cause of death: rabies. The conclusion becamenews around the world and even was used as the final question on thetelevision game show Jeopardy.

Only now, years later, in reviewing the case, has Dr. Philip A. Mackowiak,the Poe exercise organizer, determined that the doctors' analysis was skewedby the facts that he had been given.

If one can never know for certain, some people ask, "Is there reallyanything wrong with giving out these diagnoses?"

More conditions will be diagnosed and treated, advocates say. The publicwill better understand confusing conditions. And patients and families willhave hope.

Karen Simmons, whose 12-year-old son has a form of autism, eagerly postedthe information about Einstein and other famous people on her Web site, AutismToday, which gets about 200,000 hits a month.

"It's quite an inspiration that my son could do something that Einsteincould do, that he could do something great for society," the Canadian womansaid. "What does it hurt? Except possibly the reputation of a person who's nothere anymore."

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