Disease flare-ups are a regular part of my life with chronic illness
Avoiding triggers can feel like walking a tightrope
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Those living with rare and chronic illnesses may often hear the term “flare.” But what does it mean? A disease flare-up is a temporary escalation of symptoms that can affect multiple bodily systems. These attacks can be brutal and cause patients to become very sick.
When I was hospitalized and dying in the fall of 2020, it took weeks to get a diagnosis. Every time my medical team tried a treatment, I would seem to get a little better, but then decline again. They had to draw my blood three to four times a day to understand what was happening in my body.
We knew I was experiencing a flare of immune thrombocytopenia (ITP). I had been diagnosed with ITP back in 2018 during a strange, extended bout of fatigue and heavy bruising. Blood work consistently showed that my platelets were being destroyed faster than my body could make more. But in 2020, I had many other symptoms that didn’t align with ITP.
It took five weeks of blood work and late-night research for my doctors to recognize the patterns and signs. It turned out that my immune system was also destroying my red blood cells and plasma, and I’d developed blood clots in my kidneys, liver, heart, and uterus. I was having an active flare of not only ITP, but also thrombotic thrombocytopenic purpura and atypical hemolytic uremic syndrome.
These are all rare diseases. My medical team had never seen all three flare at once in one person. I was making medical history, which made me feel like a sideshow attraction. I was in a teaching hospital, so I was regularly introduced to groups of medical students and interns. A few even took pictures with me. I was struggling with diseases that many doctors will never see in person.
The problem with flares is that they are full-on attacks. They can be triggered by illnesses, infections, stress, anxiety, or any number of factors. Sometimes I feel like I’m walking a tightrope, trying not to do anything that will upset my immune system.
My ITP recently flared up over the winter holidays, causing widespread bruising, bleeding gums, extreme fatigue, and exhaustion. The trigger this time? We were in a car accident that dislocated my hip and left me unable to walk for a week, so I received my immune-suppressing infusion a week later than I was supposed to.
My other diseases may occasionally start to flare up, but thankfully, my infusions usually stop them in their tracks. Corticosteroids also help slow flares and reduce inflammation. Disease flares will, unfortunately, always be a part of my life, so it’s crucial to know what symptoms to look for so I can respond quickly and accordingly.
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.
