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What It's Like to Live With Multiple Autoimmune Syndrome

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Have you ever heard of multiple autoimmune syndrome (MAS)? My guess is that the vast majority of readers have not come across the term — and that includes a lot of physicians, too. To meet the classification criteria for MAS, a person must be diagnosed with at least three or more autoimmune diseases, which is very unusual to say the least.

To my misfortune, I happen to fall into the MAS category, as I currently have five autoimmune diseases, not accounting for all the “joyful” conditions one acquired as a direct result of having certain autoimmune diseases. That being said, it is fairly commonplace (or as common as autoimmunity can ever be considered) for someone with one autoimmune disease to go onto develop another. This means having two autoimmune diseases at the same time, which is what physicians call “poly-autoimmunity,” is considered to be present in up to 25 percent of those living with one autoimmune disease.

However, for those of us with three or more autoimmune diseases, we are considered a much rarer breed by the medical profession. There is no actual estimate on the percentage of people who go on to develop MAS, but one study suggested the number is as little as 1.5 percent of those with autoimmune disease. Thankfully, it’s very rare indeed for those with autoimmune conditions to develop MAS.

With that distinctly uncommon aspect in mind, it is very difficult to be one of the unlucky MAS “rarities” because it’s extremely hard to connect with others in a similar situation, due to a lack of awareness and recognition of MAS, even on the great wide web. I initially recall joining The Mighty in order to connect with other MAS folks like me. I wanted to hear stories and share my own experiences of what it’s like to live with so many autoimmune diseases and discuss the hurdles those living with MAS face. I wanted to find ways in which we might work together to overcome some of the unique challenges we experience. Unfortunately, I quickly realized (at the time) that MAS wasn’t on the The Mighty’s list of medical conditions.

One of the distinct problems I’ve encountered in living with such a rare syndrome is how isolating and lonely it feels to have no one to really talk to about it. Like lots of my fellow spoonies, I’ve joined many support groups on social media for each of my individual conditions, but rather than help me feel less isolated, it sometimes perpetuates that awful feeling of isolation due to the fact that I experience particular challenges that those with only one of my autoimmune diseases (from whichever support group it may be) do not. For example, I physically cannot tolerate multiple sclerosis (MS) drug therapies because they negatively impact on my lupus, causing it to flare up in a spectacularly bad manner. In turn, due to this unexpectedly bad flare-up, I need to significantly up dose my steroids in order to manage my Addison’s disease. Otherwise, I would experience low cortisol symptoms on top of everything else and be at risk of an adrenal crisis—it’s all a very unpleasant domino effect.

These types of issues are not really appropriate to share within a MS or lupus support group, as not many members, if any (that I’ve found personally) have experienced such a problem and can talk to you about it. Perhaps some members may relate to being unable to tolerate specific drug treatments, but this will most likely be caused by drug side effects and not as a direct consequence of the impact of drug treatments on their other autoimmune diseases, for which the large majority of members do not have.

While this is only one example of a practical issue, the one that upsets me most is when someone asks, “So what exactly is wrong with you?” This simple, fairly non-threatening question makes my heart drop into my stomach with dread, regardless of whether it comes from an acquaintance, a friend or even a health professional. I am always extremely embarrassed and almost ashamed to disclose my conditions due to the fact that I am consistently met with incredulous looks.

After all, how can one young person have so many autoimmune diseases?

 I recall a neurologist saying to me that in his 26 years of practicing medicine, I was “most definitely unique.” Believe me, it’s a lot less flattering than it sounds, especially when coupled with a look that plainly says, “I don’t know what on earth to do with you.”

Fortunately, I’m happy to say that there is now a Facebook support group for those of us with MAS, but more recognition of this syndrome is needed. There are people struggling with three or more autoimmune diseases and are unaware that their rare situation has a name: multiple autoimmune syndrome. We might be an unusual bunch, but we are in desperate need of support and recognition. This is especially true when it comes to those working in the medical field. They need to better appreciate the unique challenges MAS patients face as a result of having so many complex health conditions, all because of our overactive immune system.

My hope is that in time, those of us who live with this rare syndrome will be better supported and feel a lot less isolated as the wider spoonie and medical community become aware of MAS and the unique challenges it brings.

Originally published: October 8, 2019
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