With aHUS, low platelet levels are my body’s alarm system

“We don’t believe that lupus is causing your medical emergency because you’re experiencing thrombocytopenia as well.”

I blinked weakly at the doctor in front of me, puzzled by the news. I’d been admitted to the intensive care unit (ICU) just hours earlier and told I was dying of kidney failure. I live with an autoimmune disease called lupus, so I thought I might’ve been experiencing a complication called lupus nephritis, in which the immune system attacks the kidneys. That’s what my team was banking on.

I told the few friends and family members who knew I was in the ICU that I was probably just experiencing a lupus complication. It’d be a simple diagnosis and treatment plan, and a few days (or weeks) off work. No biggie. It’s scary, obviously, but I’d always known this kind of issue could happen.

But as it turned out, lupus was the least of my worries.

Recommended Reading

January 8, 2025 News by Margarida Maia, PhD

C5 inhibitor best to regain kidney function in postpartum aHUS: Study

The diagnosis that checked all the boxes

On that fateful day in September 2020, doctors had ordered dozens of blood tests, come in and out of my room asking questions, and even placed an emergency port catheter in my chest so I could start dialysis. But when they said my symptoms didn’t line up with lupus nephritis, I was surprised, confused, and worried.

The doctors explained that I was experiencing thrombocytopenia and hemolytic anemia. I’d never heard of either term, but because my body was covered in huge purple and black bruises, it made sense that some kind of anemia was at play.

Thrombocytopenia was just as scary and deadly, and I had no idea. This term refers to abnormally low levels of platelets that play a key role in blood clotting. My count was insanely low because my body was using platelets to form numerous blood clots, including in my organs. This can damage the tissue and cause organ failure, and thinned blood can result in excessive bleeding.

At the time, I truly had no idea how dire my situation was and how close to death I’d been. It took more than five weeks to receive a diagnosis, and it was what my doctors called “one of the worst options”: atypical hemolytic uremic syndrome (aHUS). This diagnosis checked all the boxes: hemolytic anemia, thrombocytopenia, and kidney damage.

It was great to have an answer and a treatment plan, because not knowing what was wrong and being barely kept alive was a terrifying experience. But back then, I had no idea what kind of damage thrombocytopenia had done to my body.

Long-term effects of low platelet levels

We knew my kidneys — the organs most commonly affected by aHUS — had nearly been destroyed, considering they were functioning at only 5%. Six weeks in, we realized that my liver was also damaged when I’d fallen and punctured it earlier. Four years later, you can can still see a small piece of my liver hematoma.

But the effects of aHUS on other organs aren’t talked about as much. I’d developed blood clots in my eyes and uterine tissue, but it took months for me to notice the damage.

My vision has also changed since I got sick. I’d just gotten new glasses a few months earlier, but after my ordeal in 2020, it felt like they weren’t working as well. My vision was blurry and I had a hard time seeing things as close as a TV.

Next was my uterus. aHUS and its treatments affected my menstrual cycle, but frustratingly, there is little research on this topic.

After I got sick, my cycles became nonstop and I bled for nine months straight. I suffered multiple invasive and painful tests and procedures to find the cause, but they were inconclusive. I finally received a hysterectomy in July 2021, and the pathology results explained it all: My uterine lining was riddled with blood clots. The organ was misshapen, lumpy, and much larger than it should’ve been.

I was thankful that I’d finally gotten a hysterectomy, because there wouldn’t have been any way to fix the damage. But the surgery also meant that I couldn’t have more biological children, which was devastating.

I’ll always be at risk for blood clots and thin blood. The damage my body endured is permanent and affects me daily. I now have blood work done every 14 days to monitor my platelet levels, as thrombocytopenia serves as an emergency beacon that something is wrong in my body. It’s strange how a word you’d never heard before can suddenly become a regular part of your vocabulary.

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.