autoimmune research, digital health

Becoming Visible

By Tiffany Simms and Bonnie Feldman

“My doctors really didn’t have an answer”
“The entire time my family doctor had no answer as to what was wrong with me”
“No one in 7 years had ever thought to test me for an autoimmune disease”
“The hospital staff thought I was faking it”
“‘It’s different for everyone’”

Why does it take so long for diagnosis? Why is it so hard to discover an autoimmune disease? Why do autoimmune patients have to suffer through challenges silently?


First off, what is an autoimmune disease? What does it mean?
Simply, an autoimmune disease is a disease that results from an immune reaction in which antibodies are produced against one’s own tissues.

Because our immune systems work to defend our bodies against infection by viruses, bacteria, and parasites, the “innate” system provides general defense via white blood cells that attack pathogens. The “acquired” immune system programs different attack cells (namely, T-cells and B-cells) to recognize specific markers (called “antigens”) on infectious microbes—this is the immunity you acquire after recovering from a childhood illness. These are all necessary and helpful bodily processes. So, when the acquired immune system goes rogue, the immune cells attack their own host instead of invaders. The different symptoms of autoimmune disease result from attacks on different cells: the pancreatic cells that produce insulin (diabetes), cells of the skin (lupus, psoriasis), joints (lupus, RA), and kidney (lupus), the lining of the gut (IBD), or the sheaths of nerves (MS).

Why does it take so long for diagnosis?

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Currently, 90% of the American population cannot name a single autoimmune disease, there are over 80 different types of autoimmune disease, and 73% of doctors do not feel qualified to diagnose AI diseases. As a result, AI patients end up seeing 5 different doctors over the course of 4.6 years to obtain a diagnosis. Furthermore, because of the invisible nature of the disease where most symptoms cannot be seen on the surface, most are brushed aside as chronic complainers, hypochondriacs, or chronically depressed.

This lack of awareness for autoimmune disease in the general public and in the medical world, has caused autoimmune disease to receive little funding for research and treatment options, thereby little understanding of the diseases.

What is the current status of autoimmune disease?

  • 50 million americans are living with an autoimmune disease while spending approximately $120 billion a year on healthcare.
  • Autoimmune disease receives less than 6% of NIH funding grants. (24% to cardiovascular disease, and 33% to cancer)
  • 75-85% of all autoimmune patients are women and it is the 8th leading cause of death in women.
  • There are 7.6 million more women with autoimmune disease than breast cancer.
  • Young adults are at most risk for 7 out of the 80 autoimmune diseases and many have more than one autoimmune disease.


What does this mean?

Despite the epidemic-like numbers of individuals with autoimmune diseases, there is little awareness and knowledge of the diseases. Most individuals cannot even define an autoimmune disease, let alone name one. Thus, autoimmune disease remains a silent killer on the loose. Autoimmune disease is under-served, under-recognized, and under-funded. The lonely voices of autoimmune disease need to be amplified and heard in order to gather momentum of the crowd. We need to work together to recognize and reduce the suffering of present and future autoimmune patients.

What can change this?

By working to put research, digital tools and Big data, and patient voice in conversation with each other, it is possible to offer tangible next steps for patients to help themselves now while helping others in the future.

We need to:

  • translate scientific advances into clinical practice
  • listen to patients as sources of new ideas and real-world experiments
  • using digital tools, each of us can contribute to the expanding knowledge of autoimmune disease
  • follow other successful platforms for sharing and collaboration, such as the MMRF, the Genetic Alliance, Sage Bionetworks, and Open Medicine Institute
  • collaborate and build collective knowledge like the Autoimmunity Network and Collaborative Chronic Care Network

Finally, all this needs to occur with an increase in autoimmune awareness.

Autoimmune disease is not disappearing nor is it on a downward trend, we need to stop ignoring the 50M plus with autoimmune diseases and start working together to decrease this invisible disease’s under-representation.

Are you ready to help?

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