Searching for a diagnosis

MYRNA BROWN, HOST: Today is Wednesday, October 21st. So glad you’re starting your day with WORLD Radio. Good morning. I’m Myrna Brown.

MARY REICHARD, HOST: And I’m Mary Reichard. Coming next on The World and Everything in It: The quest for a diagnosis.

A few months ago we introduced you to Lauren Compere, a young woman living with quadriplegia.

BROWN: Today, Senior Correspondent Kim Henderson returns with more about the search for a diagnosis for Lauren’s medical condition. Here’s the story.

KIM HENDERSON, REPORTER: Evidently 2015 was a big year for Lauren Compere, if the sparkling crown in her home office is any indication.  

AUDIO: [PAGEANT ANNOUNCER]

That’s when she was named Ms. Wheelchair Mississippi and first runner up to Ms. Wheelchair America. Lauren says the best part was making friends who had disabilities, too—like Rebecca, who recently came for a visit.

LAUREN: We rolled back behind my house and talked about things I can’t talk about with anyone else. As much as I love my parents, I can’t talk about any of that stuff with them. So it’s a beautiful thing. 

But even at those pageants, Lauren was different from the other contestants. They all knew why they were wheelchair-bound—connective tissue disorder, muscular atrophy, stroke, plane crash injuries. But for Lauren, a diagnosis for the quadriplegia she’s experienced since birth has always been out of reach. 

LAUREN: It can be difficult to fight if you don’t know the enemy that you’re fighting, that could give me treatment specific treatment options that are a lot more targeted…

A diagnosis could possibly help others, too, she says. But Lauren admits there’s a negative as well.  

LAUREN: On the flip side of the coin, you know, getting a diagnosis could mean that there is a chance of living a shorter life, and there’s an expiration date. 

David Braden is just one of many doctors who’ve worked for years to uncover the cause of Lauren’s disabilities. 

BRADEN: Lauren’s a trooper now. She’s been through a lot and she’s, um, you know, she’s never let it slow her down, so it’s pretty impressive.

Braden deals with her auto-nomic nervous system issues.

BRADEN: She has episodes of dizziness and fatigue. What we call postural orthostatic tachycardia syndrome. So I’m managing that part of her medical care. 

Braden says Lauren’s case is interesting because her neurological issues also remain undiagnosed. 

BRADEN: The issue for me, is there a relationship between that undiagnosed part of her neurologic issue and the dysautonomia or the autonomic dysfunction that she has? And so it’s just always kind of hanging out there and looming. Is there something that links this all together that explains all of her problems? 

LAUREN: Oh, you want the albuterol? 

Part of Lauren’s daily regimen involves a breathing machine. Lisa, her mother, helps her get it started. 

LISA: She’s supposed to do this [LAUREN: Supposed to do this] how many times? [LAUREN: Thirty, twice a day] Ready? [Sound of machine]

Last year, Lauren applied for and became a case study at The Undiagnosed Diseases Network. It’s a team of researchers who study DNA, trying to find mutations. While they were in Nashville for those appointments, a doctor pulled her parents aside.  

LISA: He said, “I just want y’all to know there’s nothing that y’all did or did not do that caused her to be this way.”

That was life changing for Lisa, who had always blamed herself for Lauren’s condition. She’d gotten sick during a backpacking trip when she was 15 weeks pregnant.

LISA: I’ve heard that, you know, off and on, different doctors saying, nah, that didn’t cause this, but at Vanderbilt they poured through all of her medical records. They really have an investigative mindset. So I trusted him, I guess, more than anybody else. 26 years of thinking that I made a very stupid decision. 

AUDIO: [GETTING WHEELCHAIR IN VAN]

At home, it’s all hands on deck when Lauren’s personal assistants aren’t around. Dad gets her in the van. Mom does her hair and makeup. And 21-year-old Will? Well, Lauren says her brother has her back. Especially a few months ago.

WILL: Lauren rolls out from her bathroom and something doesn’t look right with her and I’m like, “Lauren, are you okay?” 

Turns out she was having a seizure. They had to rush to the hospital. 

LAUREN: The stroke/seizure—whatever it was—again, that’s undiagnosed. That had never happened before. And we don’t know what caused it. We don’t know if it’ll happen again.

Unexplained symptoms like that only add to Lauren’s challenges. But she sees her disabilities as an opportunity to share the gospel. One memorable instance occurred at a high-security women’s prison in Louisiana.

LAUREN: The cool bond between me and all of these individuals is that they are in bondage. They’re in bondage because of maybe decisions or circumstances that occurred, and I’m in bondage. I’m in this physical bondage. And I’m able to say to them I choose to be free, and they can choose to be free.

AUDIO: [LAUREN SINGING WITH MUSIC]

One of Lauren’s favorite songs is by Sarah Groves. It’s based on the words of Psalm 84:11: No good thing will He withhold from those who walk uprightly.

As Lauren has contemplated what that means, she’s concluded the main “good thing” is peace with God—even when so many questions remain.  

LAUREN: Even though I’ve struggled with the health of my own body and the sheer emotional exhaustion from day to day living, I know that God never withholds His good things from me.

Reporting for WORLD, I’m Kim Henderson in Madison, Mississippi.

(Photo/Lauren Compere) Lauren and family

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