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Kunkel's family is lucky—many autoimmune patients suffer for years before doctors correctly diagnose them. According to the American Autoimmune Related Diseases Association (AARDA), it takes an average of five years—and five doctors—to arrive at an autoimmune diagnosis. Patients are often shuttled from specialist to specialist looking for answers. But modern medicine's tendency to compartmentalize diseases into distinct categories is not well suited to addressing autoimmunity, which in many cases resists compartmentalization. And since autoimmunity as part of a patient's family history is not a standard question on doctors' health surveys—though it ought to be—physicians often miss the boat when it comes to this diagnosis. "The experience I've had with many doctors is 'let's wait and see,'" says Kunkel. When she was suspecting type 1 diabetes with her youngest son, a pediatrician suggested waiting a week, saying that if it was indeed type 1, he would get really sick. "Do I need to wait until he's really sick?" she asked.
It's no wonder that Kunkel has found an ally in an integrative physician like Bock, who, unlike a specialist, uses a whole-body, whole-person approach to see the bigger picture. Last year, when her middle son started urinating more frequently, Kunkel suspected type 1 diabetes for him as well. "I immediately brought him to Dr. Bock. I was a mess sitting in the chair, terrified. But when I ran through the symptoms, he asked, 'Is there anything else?' I said, 'Well, he's been blinking a lot.' Dr. Bock said, 'It's not diabetes—it's PANDAS.' And it was. I was amazed. You hand him the pieces and he puts them together."
Changing the Medical Mindset
It might take something like an autoimmune epidemic to hold up a mirror to our health care system and reveal its shortcomings. Modern medicine's insistence on treating the symptoms of disease, rather than the causes—a pattern dictated in large part by the pharmaceutical companies—will do little to address these complex and chronic disorders. Slowly, though, we're starting to see signs of change, including a new way of viewing autoimmunity as one entity. "It's been a paradigm shift to get the public and even health professionals and the government to think of autoimmunity as a disease category that has a common disease pathway and a common genetic background. They were thought of very separately in the past," says Virginia Ladd, the president and executive director of AARDA. Like similar organizations, AARDA focuses on supporting research into autoimmunity. But fundraising is a challenge. "The amount of money put into autoimmune research is pretty small compared to the incidence and the cost of these diseases," says Ladd. "Philanthropists and donors are very loyal to their particular disease, whether it's MS or diabetes." What the people writing these checks ought to consider is that we might need to support research in autoimmunity as a whole in order to make progress in the fight against any one of these diseases individually.
On its limited budget, AARDA also focuses on increasing awareness—"particularly that these diseases run in families," says Ladd. "There's always difficulty in getting a diagnosis, and that's one of the clues—if someone in the family has another autoimmune disease. It doesn't have to be the same one. Research has supported that in fact this is true, which led to more genetic studies that showed the disparate diseases shared many common genes." Yet rather than finding one gene as a marker for autoimmunity, research has found several. "It's more a plethora of genes together that initiate an autoimmune response," says Ladd. In other words, the plot thickens.