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The Importance of Understanding: Kitt’s Rare Disease Story

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Kitt C. 

I was officially diagnosed with tumor necrosis factor receptor-associated periodic syndrome (TRAPS) on May 31, 2022. After years of experiencing illness from flares, I finally found the answer to my symptoms through official genetic testing at the Mayo Clinic in Rochester, Minnesota (a NORD Center of Excellence). 

I struggled for many years with trying to keep a job, as my flares are often disabling. I experience fever, joint pain, muscle pain, rashes, eye redness, abdominal pain, and severe fatigue with my flares. As you can imagine, this made it near-impossible to keep employment as I battled the mystery illness. When I would have to call in, I was often faced with, “You’re sick again?” 

The criticism from people around me made me question myself and the reality I was facing. Nobody would have guessed that I would be one of the one-in-a-million facing an auto-inflammatory disease. So often, I heard that I just needed to “toughen up,” and that I was being a hypochondriac. I was told that there was no way someone could possibly be sick that often. It was and is hurtful when you are misunderstood due to a rare disease. 

However, dealing with chronic pain and illness makes you stronger. Even after finding out my diagnosis, I still have to advocate for myself a lot, because even medical professionals don’t deal with this disease often. I often hear that they haven’t heard of the disease, so being informed and having reliable resources is so important for me. 

Having a rare disease can make people feel alone and isolated. We in the rare disease community appreciate when people are understanding and open to learning about our diseases and the obstacles we face. It’s important that our voices and experiences receive validation and support. Nobody deserves to feel alone or unimportant because of their disease. It’s so important to remember that you are not your disease.