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Rare Autoimmune Diseases: Individually Rare, Collectively Common

Written by Virginia Ladd, first published September 2019 

The Autoimmune Association estimates that 50 million Americans have one or more autoimmune disease. In total, there are more than 100 autoimmune diseases. Some examples of rare autoimmune diseases include Behcet’s disease, hemolytic anemia, pemphigus, and relapsing polychondritis.

The challenge of accurate diagnosis

For people with rare autoimmune disease, getting a proper diagnosis can be one of the most difficult challenges they face. Autoimmune Association conducted a survey of autoimmune disease patients and found that the majority of those eventually diagnosed with autoimmune diseases had significant problems in getting a correct diagnosis. Many were incorrectly diagnosed with a variety of conditions that have no specific blood test to confirm the diagnosis. Many were told that their symptoms were “in their heads” or that they were under too much stress.

Furthermore, the survey revealed that 62 percent of autoimmune disease patients had been labeled as chronic complainers or were told that they were overly concerned with their health in the earliest stages of their illnesses.

On average, autoimmune patients see four different doctors over a three-year period before an accurate diagnosis is made. Many rare autoimmune diseases have confusing and unrelated symptoms, which makes it difficult to arrive at a timely and accurate diagnosis.

Room for improvement

Increased research funding, for both individual rare autoimmune disease and collective autoimmune disease, is necessary to streamline the diagnosis and treatment of rare autoimmune disease.

In addition to research, it is important to provide autoimmune disease awareness and education for patients, practitioners, and caregivers. To learn more about the Autoimmune Association’s mission to help facilitate collaboration in areas of autoimmune disease education, public awareness, research, and patient services, visit www.aarda.org.