John F. Kennedy's Pain Story: From Autoimmune Disease To Centralized Pain

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During John F. Kennedy's (JFK's) life, his medical condition was often shadowed in mystery. Although it was well known that JFK suffered from back pain, the true extent of his disability was a closely guarded secret. However, the release of his medical records in 2002, combined with advances in medical knowledge, has allowed researchers to unravel at least some of the mysteries of his case (see Box, see page 65).1-8 In particular, since JFK's death in 1963, there have been three major advances in scientific understanding relevant to his condition:

  • The life course of genetic autoimmune disease
  • The development and impact of severe osteoporosis
  • The development of centralized pain—a permanent imprinting of pain memory in brain cells

It is now believed that JFK suffered from a genetic autoimmune disease that emerged in early childhood and transformed into centralized intractable pain in adulthood.4 A major motivation in presenting this report is to call attention to the growing importance of autoimmune diseases in pain practice. Autoimmunity may begin at birth with the production of autoantibodies; however, significant pain may not be present until adolescence or adulthood. Pain practitioners need to be fully appreciative of the lifetime course of genetic autoimmune diseases, and JFK's medical history provides a classic case from which to learn.

What Is an Autoimmune Disease?

In a normal immune system, antibodies circulate throughout the body and immediately attack and neutralize any infectious agent, poison, or toxic substance that may enter the body. It is generally believed we all have some abnormal antibodies (autoantibodies) that are not life threatening, but give rise to problems such as mild vitiligo, psoriasis, or rheumatoid arthritis. Also, some physicians, including the author, believe that good health is dependent on keeping our autoantibodies in check by good health practices such as not smoking, exercise, and a balanced diet with nutritional supplements.

Autoimmune diseases, however, are caused by the presence of too many autoantibodies in the patient's blood that may be present at birth (Figure 1). Depending on the type of autoimmune disease, autoantibodies will attack cartilage, nerves, glands, bone, skin, lining of organs, blood cells, intestine, and even organs such as the liver, heart, or kidneys. In addition, having too many autoantibodies lowers a person's ability to fight off invading bacteria and viruses, making them prone to infections. Common early symptoms observed in childhood include fever, joint pain, rashes, nausea, headache, and diarrhea. These children may have many infections and are viewed as "sickly." Over time, the constant attack on the immune system causes inflammation and severe intractable pain.

Figure 1. How a genetic autoimmune disease works.In recent years, a growing number of patients with genetic autoimmune diseases have sought pain treatment for severe pain that developed in childhood and adulthood. This class of diseases includes such painful conditions as ankylosing spondylitis, Behçet's disease, Ehlers-Danlos syndrome, Marfan syndrome, and Schmidt's syndrome. Because these disorders are rare and often difficult to diagnose, patients may initially be given a vague diagnosis of myofascial pain, neuritis, or "muscle/ligament sprain," when in reality they have an undiagnosed genetic autoimmune disease. Table 1 lists some actual cases referred to my practice, which presented with just such a scenario.

The first realization that the body may attack its own cells came from studies of hemolytic anemia. Writing in 1955, William Dameshek, MD, stated that there may be "an extrinsic factor that can attack red cells in the circulation."9 Interestingly, he uses the phrase "autoimmune process" as a rare possibility in the destruction of red blood cells. The first discovery that autoantibodies exist was published in 1956 when thyroid antibodies were discovered.10 The concept of autoimmunity did not gain wide acceptance until the 1970s and '80s.11,12

The 1962 edition of Dorland's Medical Dictionary does not even list autoimmune disease.13 The 1965 edition of Current Therapy only refers to "autoimmune reactions."14 Slowly but surely the medical profession began to accept the fact that the body may actually turn on itself. In contrast to the 1962 edition, Dorland's Medical Dictionary in 1981 defined autoimmunity as "a condition characterized by a specific humoral or cell-mediated immune response against the constituents of the body's own tissues."15 By 1989, Taber's Medical Dictionary succinctly defined autoimmune disease as we view it today: "Disease in which the body produces [a] disordered immunological response against itself. Normally, the body's immune mechanisms are able to distinguish clearly between what is a normal substance and what is foreign. In autoimmune diseases, this system becomes defective and produces antibodies against normal parts of the body to such an extent as to cause tissue injury."16

Table 1. Clinical Pain-related Manifestations of Genetic AutoImmune Diseases.

JFK's Genetic Autoimmune Disease

A common misconception is that JFK's back and pain problem began when the patrol torpedo (PT) boat 109 was demolished by a Japanese destroyer in World War II. Indeed, his back pain was worsened by the accident requiring an operation in 1944, but his pain problem began long before this mishap (see Timeline, page 56).

Following the release of JFK's medical records, there was much speculation about what caused his medical problems. In 2009, Lee Mandel, MD, a Navy physician, astutely analyzed JFK's medical history for clues—from childhood through his presidency—and came to the conclusion that JFK most likely had autoimmune polyglandular syndrome type II, also known as Schmidt's syndrome (Table 2, page 60).4 Dr. Schmidt was a German pathologist who in 1926 described two cases of persons who died from adrenal failure and thyroiditis.17 Over the years this genetic autoimmune disease has been well described.18-22

The first clue to Dr. Mandel's "diagnosis" was the fact that JFK was a "sickly" child. According to family records, his autoimmune disease began to exhibit itself in the first two years of life—when he suffered from almost constant infections during infancy, including scarlet fever. His symptoms continued throughout childhood and included nausea, diarrhea, joint pain, headache, fever/infections, and fatigue. As he approached adolescence, JFK's main symptoms included diarrhea/nausea and weight loss, which required multiple hospitalizations. At the Mayo Clinic he was diagnosed with colitis, but today it would likely have been called celiac disease, which is a common component in the autoimmune polyglandular syndrome and other genetic autoimmune diseases.4,23,24

First published on: September 1, 2012