Tuesday, October 31, 2017

Three Strangers with Wegener's, an Orphan Disease, Form Unique Bond

Stacey Rust displays some of the notes she received. 
This is a story about an extraordinarily rare disease shared by three people who connected through their shared illness. But what’s more important is how we are all connected in more powerful ways than we ever thought.

First, you need to know that Wegener’s Granulomatosis is a rare autoimmune disease with a high mortality rate that falls on the spectrum of vasculitis. It is often called an “orphan” disease. Stacey Sprague Rust at first just thought she had a chronic sinus infection. Since the disease attacks the small vessels the symptoms are masked and can be easily overlook and diagnosed as something else. This went on for eleven years. Eleven years. Her symptoms changed, the diagnoses changed, her frustration grew, biopsies, tests, the Cleveland Clinic, but then finally she got an answer. “I was floored,” she says of her diagnosis.

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Stacey verifies an old saying that “You don’t know how strong you are until you have to be.” Her medical team is pleased with her progress and Rust is happy with the return of “The General”, the nickname her father gave her since she was a bossy little girl. Her husband, Chris Rust, puts it into some perspective.  “We are still at an unknown because there’s a 40% change that she could relapse,” he says. Now she is on a maintenance program with periodic tests every few months. But getting there was a difficult and trying journey. You can imagine how frustrating it must have been to go from diagnosis to diagnosis and to be on a medical regimen that ultimately proved wrong. But that’s not the story.

One day, Stacey’s uncle told her that he heard of someone who might have the same disease so he introduced her to Sandi Turner. It took about six months for doctors to diagnose Sandi with Wegener’s. She has a slightly different form of the disease from Stacey’s more severe form but it’s just as deadly. In fact, it did kill her - once. “I was not diagnosed until my kidneys failed and my lungs filled with blood” she says. She died on the table in the hospital. ”I passed, went to heaven, and came back,” she claims. She says that she knew everything would be all right and that she had to fulfill a purpose. It was a difficult recovery with the chemo and steroids. She had to relearn how to walk among other things.

Sandi did something interesting, though, during this period. She insisted that her family photograph her journey. And they did. They took photos and made little videos. She has an album full of photos that show her hooked up to the machinery, her chemo “moon” face, her struggle to return, and the notes that she wrote to people because she could not speak or barely write. She insists that her faith helped her recover, but she equally insists that her disease influenced her spiritual development.  She says with a confident smile, “I am closer to God. I want to give back and encourage others. There is life after your diagnosis.”

Stacey and Sandi try to meet for lunch every month to encourage each other. They were grateful to find someone who finally understood what the other was experiencing. It was reaffirming to talk to someone to help piece together this puzzle.

Then Stacey heard about Chris Wright so she reached out to him. Chris says, “Stacey reached out to me. She was interested in furthering her network to help people with this disease.” What are the odds that you would find three people with such a rare disease living within miles of each other  The Virtual Medical Center reports that “The disease is uncommon, occurring in 0.4 per 100,000 people.”  The cause is unknown. In many cases the disease quickly progresses to kidney failure. There is a treatment but no cure. But with proper treatment, the five year survival rate is 95%. It’s horrible.

Chris Rust documents the first time the three have been together.

Chris Wright is a vibrant young man, teacher, coach, married with one child. He said it took about six months for his medical team to diagnose him. He, too, came close to death.

Chris says, “I was in a coma. It was very much up in the air was to whether I would make it or not. They discovered that one lung was full of blood and the other was halfway full. So they induced a coma. I had a moment when everything was at their bleakest where I could sense that there was something very wrong physically. It became very calm and cool. I had visions of friends and family who have passed and they gave a reassuring smile and then was the extent of the experience.” But he knew that he would be okay. “My message now is that God has a plan for us. I am supposed to have an impact on someone else. I was kept around for a reason. We all have our own purpose.” Like Stacey and Sandi, he endured the chemo and steroid treatment.

Located down Moock Road in Wilder, KY. 
Chris explains, “When I woke up [from a two week medically induced coma] there was a large garbage bag next to the bed that was completely full of letters from students at the school. They were not the token ‘hope-you-get-better’ notes but deep stuff about how I impacted their lives.” It changed how he views his profession and his mission as teacher. “I think I am a better teacher for it but I am also a more passionate person for my profession. I found my why and my calling.” 

There’s something about these people. These three have never been in the same room together until one recent Thursday evening when they agreed to sit for this interview.  I found it heartwarming how they hugged and greeted each other like they have known each other for many years. They had enough shared experiences to be close friends already. They smiled for photos and held onto each other. They were anchors for each other.

These three share a common rare disease, share common attitudes, and share deep empathy for people. They know how the other has suffered. They know how the disease changed them. And they know how it has connected them to each other and with everyone around them. They share a deeper empathy for others. They feel a deeper bond with the world. They have reached a certain peace. They want their story, and it is a shared story, to inspire others. They have learned something from each other - they are not alone. And that gives them hope.

Chris has a renewed passion for his profession. Sandi has started a charity, Northern Kentucky Urban Charity, that ministers to the underserved and children of Covington. She mentors at Holmes.  Stacey is quite busy focused on raising her three sons. They all have work to do, a purpose, a direction, and support.

Sandi said, “We need to be grateful. Life is worth living. I don’t want it [the disease] to define me; I want to define myself. I’m going to stay positive and live life to the fullest.” The others agree. The disease is part of who they are, but it does not control who they are.

You would never know how ill they are when you look at them. They appear so normal. But know this. People may look okay on the outside, but open someone up and you’ll see what’s wrong. People often jump to conclusions. We tend to fill in holes of our limited knowledge with what we know or guess and it is seldom accurate.  There is no man in the moon; we see a series of craters, but we fill in the unknown blanks so we see a face. And so we might not see what we need to see.

Wegener’s Granulomatosis is an “orphan” disease. And how uniquely rare is it to find a few others who share the same condition? Stacey Sprague Rust, Sandi Turner, and Chris Wright are orphans with an “orphan” disease no more. They are family.

Chris Wright, Stacey Sprague Rust, Sandi Turner wear read for their disease.