From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease

Q: When is asthma not just asthma?
A: When it’s a symptom of Churg-Strauss syndrome.

Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was acting up. “I fought it all spring,” she recalls. “On May 6, it really started to fall apart.” That’s because Carole didn’t just have asthma.

She was actually fighting the initial symptoms of an autoimmune disorder, Churg-Strauss syndrome.

File:Churg-Strauss syndrome - very high mag.jpg
In Churg-Strauss syndrome, there’s inflammation in the wall of blood vessels of the body, as shown in this highly magnified image. [Image Source: Nephron (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)
With Churg-Strauss, the blood vessels become inflamed and restrict blood flow.

It’s also known by the more scientific sounding “eosinophilic granulomatosis with polyangiitis,” which basically means “a disease characterized by a specific type of white blood cell, inflamed tissues, and inflamed blood vessels.” Though symptoms can vary tremendously from one person to the next, Churg-Strauss is generally characterized by three unique phases:

  1. The allergic stage: Patients may experience asthma, hay fever, or sinus pain/sinusitis.
  2. The eosinophilic stage: The number of eosinophils (a type of white blood cell) in a patient’s lab work increases dramatically. Eosinophils may also be found in surrounding tissues, and can cause damage there.
  3. The vasculitic stage: Vasculitis is severe inflammation of the blood vessels. It restricts blood flow to parts of the body, leading to tissue and organ damage. When that happens, patients have entered the main stage of Churg-Strauss syndrome.

When Carole says things “really started to fall apart,” she’s referencing a tingling that began in her right arm and eventually affected all her limbs. Her blood vessels were likely inflamed by that point. The sensation caused Carole to fall on at least one occasion, and after that she couldn’t walk on her own.

It was an emergency room doctor (who wasn’t even supposed to be working the night Carole came in) who made the Churg-Strauss diagnosis. That in itself is pretty incredible. Every year, about two to three people out of every one million are diagnosed with Churg-Strauss. In other words, it’s rare–very, very, rare.

Rare can be beautiful, but it generally makes finding a diagnosis very difficult. [Source: wikimedia]
Carole had to stay in the hospital for the next three weeks while she received treatment to decrease her inflammation and suppress the disease. But the scariest part for her, she says, came when she was released.

“I was away from the security of the hospital, from those who knew about it, and came home to all of us who knew nothing about it or how far it was going to go,” she remembers.

Even after returning back home, Carole continue chemotherapy for six months in order to help suppress her immune system. For a while, every odd sensation she experienced would send her into a panic that things were escalating again. And in addition to dealing with side effects from treatment and her own worry, Carole also had to learn to walk using braces and a walker.

Thankfully, this story has a happy ending. The walker was gone by August. By Christmas, the brace was off her right leg. The left leg kept its brace until midway through the following year, but eventually Carole regained her sense of independence. Today, her Churg-Strauss is in remission.

Team Giphy happy dancing cool thank you
We’re so happy for you, Carole! [Source: Giphy.com]
“I still face challenges,” she says. “But I’m not bitter at all for what happened.” Among other things, Carole points to her friends and family for helping her through a difficult time. Looking ahead, there’s hope her story might help others: Churg-Strauss can lead to long-term damage of the heart, lungs, and nerves. To help minimize the risk of those complications, it’s important to start treatment as early as possible.

So, once again, when is asthma not just asthma? When it’s a symptom of something greater.

If you want to learn more about Churg-Strauss syndrome, you might want to visit the Churg-Strauss Syndrome Association‘s website.


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