My name is Katia, I'm 43 years old and live in Brazil. My kidney journey began in 2008. I discovered I had kidney failure quite by chance during a blood donation attempt. The nurse noticed I was very anemic and advised me to see a doctor. Tests revealed I only had 20% kidney function remaining. A subsequent biopsy led to a diagnosis of Lupus.
I managed my condition conservatively until 2015, when I needed to start hemodialysis. On April 26, 2016, I received a kidney transplant from my brother, who was a perfect match. I thought everything would be fine after the transplant, but unfortunately, I was mistaken.
A few months later, my kidney function began to decline again. Further investigations revealed my actual diagnosis wasn't Lupus, but Atypical Hemolytic Uremic Syndrome (aHUS). I was fortunate to join a program called "Somos Raros" (We Are Rare), which provided the medication Soliris (eculizumab) for nearly two years. However, the donation program ended due to logistical issues, leaving me without the essential treatment.
The medication is extremely expensive. My lawsuit requesting government funding was denied. In 2023, I tried to get back on the transplant waiting list, but doctors determined it wasn't possible without the aHUS medication. I filed a new legal request, this time for a different medication, Ravulizumab, and I am still awaiting a response.
In April 2024, I contracted dengue fever, which forced me back onto hemodialysis, where I remain today. My hope is to receive the necessary medication so I can pursue another transplant. An artificial kidney would be an incredible possibility, as aHUS would not affect it.
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