I’m not alone in living with multiple autoimmune diseases
For many patients, these conditions tend to come in pairs or even multiples
One disease becomes two, then two become three — each with its own comorbidities and complications. When I was diagnosed with yet another autoimmune disease, I knew it would complicate my life.
Turns out that multiple diagnoses are fairly common.
I’ve dealt with symptoms of systemic lupus erythematosus for most of my life. I know the ins and outs of this chronic autoimmune disease: skin and hair issues, joint and muscle pain, fatigue, rashes on my face and occasionally my whole body, and a weakened immune system.
But in 2018, a lengthy bout of fatigue and bruising all over my body alarmed one of my doctors. She sent me to a large teaching hospital for more tests, and her gut feeling was right. My immune system was attacking my platelets and destroying them faster than my body could replenish them. A rare autoimmune disease called immune thrombocytopenia (ITP) was to blame. In the U.S., ITP affects approximately 9.5 adults per 100,000 (and can also occur in children).
At the time, I’d been seeing a new rheumatologist who suspected I also had Ehlers-Danlos syndrome (although I wasn’t officially diagnosed until 2024). But just knowing it was a strong possibility put me at three chronic illnesses: two autoimmune diseases and a connective tissue disorder.
When I nearly died from multiorgan failure in September 2020, my doctors and I assumed lupus was attacking my kidneys. But after tests and blood work, the doctors realized it was not a lupus flare.
It took five long weeks to find an answer for what was slowly killing me. Much to my dismay, I learned I had another autoimmune disease, and an ultrarare one at that: atypical hemolytic uremic syndrome (aHUS). It’s so rare that it’s estimated to affect only 3 people per million.
aHUS caused tons of tiny blood clots to form inside several of my major organs, leading to permanent damage. This also resulted in hemolytic anemia, the rapid destruction of red blood cells, as well as thrombocytopenia, or a low platelet count. Because my platelets were being destroyed, I had an ITP flare at the same time.
It’s been more than five years since I spent two months in the intensive care unit. That experience permanently changed my body and my life. I now receive a monoclonal antibody infusion every two weeks that has chemotherapy-like side effects. It helps to control the most dangerous symptoms of aHUS and ease some of my lupus symptoms.
Multiple diagnoses are common
But what are the chances of having three autoimmune diseases, two of which are rare, and a connective tissue disease?
Apparently, that’s a thing. When a person has more than one autoimmune disease, it’s known as polyautoimmunity. If they have three or more autoimmune conditions, as I do, it’s called multiple autoimmune syndrome.
I’ve noticed that many other members of aHUS Facebook groups also have multiple autoimmune diseases, and research suggests this isn’t unusual. A study published last year in The Journal of Clinical Investigation found that 34% of those living with autoimmune disease have been diagnosed with more than one.
Despite the additional diagnoses, it’s been interesting to make sense of all my symptoms. I’ve experienced signs of Ehlers-Danlos syndrome my entire life, but no one made the connection until a few years ago. The news is a little unsettling, but it’s another clear answer — something every patient needs but doesn’t always get.
Going forward, I’ll continue to be the medical oddity that I am. It’s always amusing to meet a new doctor or nurse who’s in awe of my experiences. Living with multiple diseases gives me opportunities to learn more and share my knowledge with other patients.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.Â
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