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How a mysterious ailment ended Eleanor Roosevelt’s life

While mourning the death of Justice Ruth Bader Ginsberg, my mind wandered to the life of another great American woman, Eleanor Roosevelt. While her life accomplishments are well-known — she was our nation’s longest-serving first lady, a brilliant political activist on behalf of those with no voice, a syndicated newspaper columnist and member of the first delegation to the United Nations — her death on Nov. 7, 1962, was a medical mystery for many years.

Thanks to the sleuthing of a physician named Allan B. Schwartz, a professor of internal medicine at Drexel University in Philadelphia, we have a far better idea of what brought down the curtain on this remarkable woman’s life.

In 1960, Roosevelt returned to her New Deal roots and began touring the inner cities of the United States. There, she interacted with people living in awful conditions and who suffered disproportionately from serious illness and poor access to hospitals and doctors.

It was at this time that Roosevelt began to experience severe weakness and fatigue. Such symptoms are often ascribed to people of her age, but they put quite a damper on her remarkably busy public schedule. Upon examination, her physicians noted she was anemic and they prescribed a course of blood transfusions to right the imbalance in her bloodstream. Unfortunately, she experienced a syndrome known as blood transfusion reactions — chills and high fever — during these treatments.

Despite several transfusions by April 1962, her anemia only worsened and she also developed a low white blood cell count, a low platelet count and bone marrow that was not producing much-needed blood cells. This condition, aplastic anemia, not only causes extreme fatigue but also presents a huge risk of overwhelming infections, severe bleeding spells and organ failure. The chief problem was that none of her doctors knew what was causing her rare blood disorder. Given this was more than 50 years ago, the treatment options were rather limited.

In the early summer of 1962, she was prescribed a course of prednisone, an adrenal corticosteroid drug that can stimulate the bone marrow to produce blood cells. Unfortunately, one of the worst side effects of too much prednisone — beyond bleeding, weight gain and high blood pressure — is difficulty in fighting off infections.

By August, Eleanor felt well enough to visit the family summer home on Campobello Island, the same place where her husband Franklin had developed symptoms of poliomyelitis in 1921. She wanted to help dedicate the new bridge that would connect the Canadian island to Maine and named for her late husband.

By September’s end, she was hospitalized with high fevers, night sweats so severe she often needed to change her pajamas and bed linens, a dry and persistent cough, anemia and blood in her bowel movements, which indicated bleeding somewhere along her gastrointestinal tract. Subsequent blood transfusions induced more transfusion reactions and fevers as high as 105 degrees Fahrenheit.

A second, painful bone marrow specimen was obtained, with the thought that Eleanor was suffering from tuberculosis. At the age of 35, she did suffer from a serious bout of pleurisy in 1919, but the cause was never determined. During the 1960s, and well into the late 1980s, bacterial cultures for the slow-growing Mycobacterium tuberculosis (the microbiologic cause of TB) took six weeks to determine. As a result, Roosevelt’s doctors classified her condition as a “fever of unknown origin.” Just to be safe, however, she was placed on the anti-tuberculosis drugs streptomycin and isoniazid.

The former first lady insisted that she would not die in a hospital, and on Oct. 18 she discharged herself against medical advice to her New York City home on East 74th Street. Her prognosis was poor — by Nov. 4 she appeared to have suffered from a cerebrovascular accident or stroke. Three days later, she died in her own bed.

By late October, the bone marrow bacterial cultures came back positive for tuberculosis — a diagnosis made too late. Upon autopsy, the doctors discovered tuberculosis infections in several internal organs without the sentinel signs of granulomatous inflammation in the lungs, kidneys or liver.

Her aplastic anemia and the huge doses of prednisone hardly helped her to stave off the spread of infection. Equally interesting is that the six-week course of anti-tuberculosis medications did little to cure her TB. What this means, of course, is that Roosevelt not only died of tuberculosis — which may have begun when she developed pleurisy at 35 and then reactivated in her mid-70s — but that she died of a drug-resistant form of tuberculosis, one of the great infectious disease problems facing the world today, and which she might have contracted as an older woman during her peripatetic travels around the world.

In her life of 78 years, she overcame shyness and other obstacles to become one of the most admired women in the world. A year after her death, in the Nov. 3, 1963, issue of the New York Times Magazine, the Pulitzer-Prize winning poet, playwright and former FDR speechwriter Archibald MacLeish said it best: “Death is not an automatic confirmer of fame; more often than not it opens questions that life had seemed to close, dissolving indestructible reputations in its ironic silence. Only rarely does a great name grow greater when its owner leaves it, as Eleanor Roosevelt’s unquestionably has.”