I recently read an interesting commentary written by two physicians, both of whom are dealing with autoimmune disease in their own bodies. The journey of each autoimmune (AI) disease patient is different and because the risk of having multiple AI diseases or disorders is higher if you have one, this is particularly relevant to the PBC patient.
As we continue through our own journeys with PBC, if we do develop other AI diseases (either prior to diagnosis of PBC or afterwards), this just compounds the overall health picture. In my personal experience, I have several AI diseases. The American Autoimmune Related Disease Association¹ (AARDA) notes that there is a common thread between AI diseases, particularly in women. Since PBC is 10 times more prevalent in women than men, this follows the consensus by researchers, clinicians and patients who are involved in the AI disease community.
From a clinicians’ point of view, save a true AI disease expert, AI diseases are generally viewed as nothing more than an annoyance and not a serious threat to the overall health of a patient. This is a common misconception in the medical field. There are indeed AI diseases that can be life limiting or life threatening if not treated appropriately. Unfortunately, the medical profession has failed to truly define where AI disease lives in the space of generally agreed upon systems of the body, and more importantly, who should treat these diseases. For Rheumatoid Arthritis (RA), you would be seen by a rheumatologist. For eczema, you would be treated by a dermatologist. For PBC, you are treated by a gastroenterologist or hepatologist. For endometriosis, you are seen by a gynecologist. You begin to see the pattern, right?
Even though all the above are AI diseases, they are not treated by a centralized specialist in AI disease. Rather, we are treated by the system most effected by the AI disease (PBC = liver doctor). But if I have multiple AI diseases, which I do, who has the big picture about that? An immunologist? My Primary Care Physician (PCP)?
Let’s start at the beginning. There are more than 100 autoimmune related diseases according to AARDA. According to the National Institute of Health (NIH), if you have more than three (3) AI diseases, you have what is called multiple autoimmune syndrome (MAS).² About 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases according to the NIH. The NIH classifies AI disease under their Institute of Allergy (NIHIA). Would you go to an allergist for PBC?
So how do we begin to address the issue of AI disease in patients with multiple AI diseases or MAS? The NIHIA main website page says: The chronic and debilitating nature of these diseases, which can lead to high medical costs and reduced quality of life, is a burden on patients and also affects their families and communities. ³ There is no mention of the real-life consequences of some AI diseases.
There is a recent research paper that highlights that exposure to an Epstein-Barr virus (EBV) protein (which causes mononucleosis), can “switch-on” risk genes for AI diseases4. Is this the beginning of our journey with AI disease? In my case, my son was 14 (in 1984) when he came down with mononucleosis, so I know I have been exposed, and in fact have tested positive for this antibody. Did I have any AI diseases prior to this exposure? Yes, but only one at this point (endometriosis). If I hadn’t been exposed to EBV would I have avoided development of MAS? Probably not. This same research goes on to tell us “EBV infection is nearly ubiquitous in the human population worldwide. Most people acquire EBV in early childhood, experience no symptoms or only a brief, mild cold-like illness, and remain infected throughout their lives while remaining asymptomatic.” 4 So, it seems, I have been exposed to EBV much earlier than my first AI disease developing. Is this true for most AI disease patients? Most PBCers? There is a survey underway by the PBCers Organization to obtain natural history information including history of exposure to common viruses such as EBV that may give us a better answer. In preparing to write this blog post, I looked back at my own medical records and see that I was tested for EBV in January of 2007 and that test was negative. In July of 2013 I was tested again and was positive. Since I was diagnosed with PBC in 2007, it seems that there is a disconnect on the issue of exposure to EBV and my own personal AI disease correlation. Perhaps my 2007 test was a false-negative test. I will never know.
The cause of PBC is not a hard and fast cause and effect type of classification. We do know there is a component of AI disease, and a genetic component, but there is also a “trigger” which turns the disease on. Is that trigger a virus, bacteria, fungus? Is it an environmental toxin like formaldehyde? This research continues.
But to get back to the AI disease aspect and a perspective from a doctor’s viewpoint, having been told “it’s all in your head” but a physician I trusted and respected up to that point, it’s especially difficult I’d imagine to have an AI disease while being a doctor in a field of colleagues who general dismiss the notion that AI diseases are real, serious, or have life-altering effects upon us. No wonder they resisted sharing their stories. Just as many of us do. Until we change the mentality that something invisible to the eye, nose, or ear doesn’t exist, we are all in for a ride that promises many winding turns along the way.
May your journey be one filled with good health!