Europe’s E. coli outbreak is being monitored closely by doctors and public health authorities around the world, who are alarmed by the unprecedented number of hemolytic uremic syndrome cases, the acute kidney failure that has hospitalized hundreds in Germany and neighboring countries.

In most outbreaks of E. coli poisoning, about 5 to 10 percent of patients suffer this life-threatening complication — most of them younger children or seniors with weakened immune systems. Based on available information from Germany, more than 30 percent of the illnesses are developing into HUS.  As of Wednesday, more than 1,500 people, many of them middle-aged women, were reported sick in Germany and adjacent countries, and nearly 500 of them were said to have been diagnosed with HUS.

Survivors of HUS describe the disorder as excruciatingly painful.  “Try to remember the worst pain you’ve ever experienced, and then multiply it by at least a hundred,” says Laura Lucy who, as a college student in Alabama, survived a horrible case of HUS in 1993.  “And there is absolutely no relief.”

Hemolytic uremic syndrome usually (but not always) begins with E. coli poisoning.  In most cases, the culprit has been E. coli O157:H7, but the German outbreak has been identified as E. coli O104:H4, a rare strain that some believe may be the result of a recent mutation.

The human body is home to countless millions of perfectly healthy E. coli bacteria, which play important roles in digestion and other body functions.  The emerging toxic strains, however, breed in cows and other animals and are shed in animal feces, which can then contaminate human food.

As few as 100 bacteria can cause the illness. Once ingested the bacteria multiply rapidly in the intestine, causing diarrhea, and attach themselves to the lining of the large intestine. There the poison is absorbed into the intestinal capillaries, clings to white blood cells  and piggybacks with those cells to the kidneys.  From there, the poison can be distributed to the brain, pancreas or other organs.

Meanwhile, the toxin attacks blood cells, triggering the platelets that cause blood to coagulate. The platelets, in turn, cause blood clots which block blood circulation and begin to shut down the kidneys.

With the colon inflamed, the patient is subjected to painful abdominal cramps and blood-saturated diarrhea. Urination ceases and the body begins to swell with bodily fluids that further increase the discomfort and toxicity. 

HUS has been relatively rare, with just 60 cases per year in Germany — less than one in a million per year. The high numbers of HUS today could mean the overall size of the outbreak is larger than has been reported, or that E. coli O104:H4 is more likely to cause HUS.

Treating E. coli infections with antibiotics tends to increase the risk of HUS by killing the healthy bacteria needed to combat the toxic invasion. Once the symptoms of HUS appear,  dialysis may be needed to prevent the kidneys from failing.

“As a child, I always wondered if I wanted to have children, if it was worth the pain,” Laura Lucy recalls. “But I learned that childbirth is nothing compared to the pain of HUS.”

When she was rushed by ambulance to a major hospital in Birmingham, she got the first of 19 excruciating, four-hour blood transfusions.  “I was vomiting throughout,” she says. “At times I would be very, very cold.  Other times, there was a painful tingling throughout my body as if an electric current was running through it.  Many times I was so affected by the pain and shivers and nausea that the treatment would be halted until I could bear to continue.  But we couldn’t wait long because my blood in the machine would begin to clot.”

Her body was horribly swollen with fluids that she could not vacate, and her lungs filled with fluid.  Eventually, her kidneys shut down, and she was unresponsive for three days.

When she regained consciousness, her kidneys were still not operating and she was on a respirator. “Just when I had renewed hope that I was getting well, all my blood functions crashed again. The platelets were still being destroyed by the infection.”

There were more blood transfusions and more dialysis. The slightest touch to her skin caused new bruises, so she was covered with purple blotches and stretch marks from 30 pounds of retained fluids.

Yet Lucy, in retrospect, feels she was lucky. Her kidneys eventually began to function again. Her blood platelet count began to improve. She survived.

For many HUS survivors, the illness never ends. The illness has damaged their kidneys and other organs, weakened their immune systems, and they have a high risk of kidney failure later in life.

Eighteen years after her illness, Laura Lucy has had her spleen removed, and she is highly susceptible to colds and flu and other bugs. But she still has her kidneys, and she has not given up hope of having a child.

She shudders at the news that hundreds of people, many of them German women her age, are suffering.

“In my time, HUS was about hamburger, and I haven’t eaten ground beef in all these years,” she says. “But now it’s about spinach and lettuce and tomatoes and everything.”