What comes next: Telling my story after an aHUS diagnosis
I survey my very best columns since I began writing about my disease
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A perfect storm of events in September 2020 nearly led to my demise. The intensive care unit became my temporary home for almost two months as I was thrust into the world of rare disease, chronic illness, and intense medical care.
Diagnosed with an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS), along with thrombotic thrombocytopenic purpura and a flare of immune thrombocytopenia, a disease I already had, I faced an immune system that was basically attacking every element of my blood production, except my white blood cells.
It took weeks just to get that diagnosis. While my doctors searched for answers, they did all they could to keep me alive. Dialysis, plasmapheresis, 18 blood transfusions, blood draws, and immunizations all became part of my daily routine. I now receive monoclonal antibody infusions to manage my condition.
Telling my story
In 2022, I was offered the opportunity to write about my disease. I’d never written professionally before, so I wasn’t sure what I could contribute, even though I was very active in Facebook support groups. But I’ve now written hundreds of columns, and readers tell me they feel heard and seen to read about someone experiencing the same things they’re experiencing.
This week, I want to highlight what I consider my top aHUS columns, the ones that tell important parts of my story, describe life-altering events, and describe pivotal moments in my disease journey. As I introduce each topic, you’ll find the column in the hyperlink.
To begin, my debut column tells my origin story — when I was diagnosed and when aHUS became a permanent word in my daily vocabulary. This column gives all the medical details, life-saving treatments, and prognosis during what was a very tumultuous time.
I’d never used the word comorbidities until I became sick. One might assume that once I had a diagnosis, I could head over to Google and look up everything there was to know about my rare disease. But no one prepared me for all of the extra issues that came with it. I have almost two dozen comorbidities that I grapple with daily.
Another thing I grapple with is sleep. I have sleep disturbances that cause night terrors, chronic pain, and anxiety. Our bodies and minds need significant rest in order to heal and function each day, but I’m not getting it.
Being sick is expensive. The cost of medical care, medications, missed work, and travel for treatment all add up and cause stress. My disease caused me to lose everything I’d built in my life, but I wrote a three-part series about financial hardships, how to avoid them, how to get assistance, and creative ways to save and make money.
I’ve seen a lot of discouraging things these past few years, and I know that death is unfortunately inevitable. But that doesn’t make me any less scared. I still strive to look healthy each day — a little makeup, a nice dress, and some caffeine can hide the war that our bodies are raging against us.
My relationship with religion and God has been absolutely tested more than once during my sick years. It can be very hard to maintain your faith when it feels like God has forgotten you. But despite my struggles, my rare disease journey has brought me closer to God. Surviving what I have makes me feel like a walking miracle.
The columns I link to above are, I think, some of my best. My life didn’t end at my diagnosis. A new life journey began and I’m happy to be able to be writing about it. I’m more than just my disease, and the path I walk each day is a testament to that.
Which of my columns are your favorite? Please share in the comments below.Â
Note: aHUS News is strictly a news and information website about the disease. 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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