Being diagnosed after the advent of what I consider a miracle drug saved my life
Soliris was approved by the FDA to treat aHUS in 2011
I never imagined that I’d be able to say I might be doing chemotherapy the rest of my life. But I also never thought I’d be on the brink of death in an intensive care unit (ICU) when I was 36. Without the advent of a lifesaving drug, I would most likely be dead.
In September 2020, I nearly died from a rare disease triggered by COVID-19. I suffered from kidney and liver failure, hemolytic anemia, and hypertrophic cardiomyopathy. I had plasmapheresis, dialysis, and 18 blood transfusions. It took weeks to be diagnosed with atypical hemolytic uremic syndrome (aHUS). I spent nearly two months in the ICU, and my life was forever changed.
Two of the only treatments for this disease, and my particularly rare gene mutation, are Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz) infusions. I take Soliris, which in my case is administered every 14 days. It basically stops my immune system from spiraling and attacking my blood and organs.
The use of Soliris for aHUS is fairly recent. It was approved by the U.S. Food and Drug Administration to treat the disease in 2011. Before that, most standard treatments included plasmapheresis, dialysis, and sometimes kidney transplant. But life expectancy and prognosis when relying on plasma exchange and plasma infusions were dim.
A lifesaving therapy
The aHUS Alliance reports that the majority of aHUS patients progress to kidney failure within their first three years, and 65% of patients die, require dialysis, or have permanent kidney damage in their first year with the disease. If I’d been diagnosed before 2011, I might have had an even harder journey then the one I’ve faced the past three years. Mortality rates are still around 25% since Soliris and Ultomiris arrived on the scene.
I’m fortunate my diagnosis came after the advent of Soliris and Ultomiris. There’s a good chance that without them I would’ve had to stay on dialysis forever, instead of only five months. I still struggle daily with permanent renal damage and the medicine’s side effects, but my rare thrombomodulin gene mutation (THBD) might put me at greater risk of a relapse without it.
Soliris is a lifesaving drug. No matter how awful my side effects are, it keeps me alive for my children. Without it my kidneys wouldn’t have been given the break they needed to heal to just above 15% to get me off dialysis, and my immune system would’ve continued to attack my body.
It’s terrifying to think about how different my story could’ve been if I’d been diagnosed before 2011. I never realized how rare my disease was, how dire my situation was, and how recent the treatment for it was until I started sharing my story. Surviving what I did is truly miraculous, and I thank Soliris every day for allowing me to keep “walking on water.”
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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