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Bionic mutant delivers heartfelt message

After years of misdiagnosis, Liz Scharmann learned she has a congenital heart disorder; now she promotes awareness of heart disease
by: JiM CLARK Liz Scharmann and many of her students at West Orient Middle School donned red clothing Friday, Feb. 3, in observance of National Wear Red Day, an American Heart Association event to showcase support for women’s heart health. Scharmann, 29, has a rare, but potentially fatal, congenital heart condition called long QT syndrome and has a defibrillator implanted in her chest.

At the beginning of every school year, Liz Scharmann writes a letter to her students telling them a little bit about herself. She grew up in Gresham. She was a dancer for 20-some years. Musical theater is her passion. Her husband is in an indie-pop band.

'And just so you know,' she invariably adds, 'I'm a bionic mutant.'

That's her way of telling youngsters about the rare but serious heart condition she was born with.

Scharmann, 29, has long QT syndrome, a malfunction of the heart's electrical system. The syndrome consists of at least eight types of abnormalities.

Scharmann, who has long QT type 2, explains her condition in layman's terms: The resting spaces between heartbeats are too long, and the heart can get off rhythm, causing dizziness, fainting and even sudden cardiac death.

Scharmann suffered from bouts of light-headedness, fainting and rapid heart rate from childhood through college. But her condition was repeatedly misdiagnosed until 2005, when genetic testing finally revealed the defect.

'When you're 23 and you get a diagnosis of 'Oh, you can get cardiac arrest and die at any moment,' I went through a period of trying to get a grip on that,' says Scharmann, who teaches seventh grade language arts and literacy at West Orient Middle School.

Fortunately, long QT syndrome is treatable. In addition to changing her diet and exercise habits, Scharmann had a defibrillator implanted above her heart in 2007; the device will deliver a jolt of electricity to her heart in the event of a life-threatening heart rhythm.

'The defibrillator hasn't shocked me yet,' Scharmann says with a laugh. 'What it does is give me peace of mind.'

She also has begun taking medication for a secondary heart condition she was diagnosed with last December - inappropriate sinus tachycardia, in which the sinus node in her heart causes an abnormally fast resting heart rate.

Scharmann uses her experience to help the American Heart Association spread the word about how heart disease affects everyone - children, teens, young adults, men and women.

She joined other heart-health advocates all over the state by wearing red on Feb. 3 - the heart association's Wear Red Day, an annual event that shows support for heart health in women. The association's local chapter also invited Scharmann to speak at its Go Red for Women luncheon in October.

In particular, she hopes sharing her story will encourage young people to pay attention to what their bodies tell them, she says.

Though heart disorders such as hers aren't common, Scharmann remembers the heart-related deaths of two students in the Gresham-Barlow School District in the past 10 years or so. She thinks automated external defibrillators (AEDs) should be available everywhere children congregate.

'When I was in school, I'd faint in the middle of class and the teacher never called my parents,' she says. 'We need AEDs in schools; we need to take them on field trips and to away games.'

Early warnings

Scharmann, who graduated from Reynolds High School - she was Liz Oldham back then - was an active kid who took ballet, tap and jazz dance classes. She majored in theater at Portland State University. 'Musical theater is really my passion,' she says.

But she and her parents knew something was wrong with her, and it took them years to find out what it was.

When Scharmann was 3 or 4, her heart would beat furiously for no reason. Her mother, a nurse, would take her pulse, 'and it was racing, racing, racing - I do have some memories of that,' Scharmann says.

In middle school, where she was on the track team, Scharmann developed a habit of fainting after running. 'I started passing out and getting really winded and unable to recover,' she says.

The episodes occurred randomly, lasting from a couple of minutes to a couple of hours. 'It didn't happen every time I exercised; it could have been when I was sleeping,' Scharmann says.

Her mother took her to different doctors over the years, but tests proved inconclusive - results of her electrocardiograms came back normal for many years, Scharmann says - and the diagnoses varied.

'I got everything from 'You're too skinny and not eating enough' to 'You're a high-strung child,' ' she says.

In September 2004, she was dancing around at home - being her usual goofy self, she says - when suddenly she couldn't breathe. The next thing she knew, she woke up on the floor in convulsions.

Her parents took her to the emergency room. This time, the neurologist who reviewed her test results determined that Scharmann's problem was a cardiac issue, not a neurological one.

She was referred to a cardiologist, and after at least six months of tests, she finally had a diagnosis. She says she is the first known member of her family to have long QT syndrome; her two biological sisters plan to get tested.

Long QT syndrome 'is the most common of the uncommon genetic heart diseases,' says Dr. Mark Reller, professor of pediatric cardiology at Oregon Health and Science University and cardiac program director at Doernbecher Children's Hospital.

It's estimated that as many as 1 in every 2,000 babies has long QT syndrome, Reller says. Some types of the syndrome, such as the one Scharmann has, pose a greater risk of sudden death than others, he says. What they all have in common, he adds, is 'the heart rate tends to be slower, but otherwise your heart looks normal.'

Fainting spells could be a sign of long QT syndrome or other heart problems, Reller says, but he points out that people faint for many reasons unrelated to the heart.

Diagnosing uncommon heart disorders can be tricky, according to Reller. Usually anyone can order an electrocardiogram or echocardiogram (an ultrasound of the heart), 'but they typically aren't done unless there's a suspicion of a heart problem or a positive family history of heart disease,' he says.

Some say those tests should be performed on everybody, but there's the possibility of getting false negatives or false positives on the tests, 'and where do you stop?' Reller says. 'If you get a borderline finding, do you do another one?

'But I think they're warning signs, and I think that's the message. If you're fainting more than usual or have trouble breathing, seek an appropriate evaluation.'

Life changes

Scharmann's diagnosis has prompted her to make substantial changes in her lifestyle to keep her heart healthy. She has eliminated caffeine and other stimulants from her diet and is trying to cut out sugar - artificial sugar is especially bad for her. On the other hand, she is encouraged to eat more salt and potatoes so she gets enough sodium and potassium.

She's also had to cut back on exercise, which is hard for her.

'I'm kind of at war with the exercise thing,' she says, explaining she no longer pushes herself to the limit 'because I never know what's going to trigger an episode. Sometimes I feel fine, and sometimes I have an episode that makes me feel terrible for the rest of the day.'

She doesn't dance much anymore. She has stopped jogging and walks instead. She's not allowed to swim 'because it has something to do with the motion and the water temperature and how it changes my breathing,' she says.

And no more roller coasters or haunted houses.

'I'm not supposed to be startled,' she says, adding with a laugh, 'How can you avoid being startled?'

Scharmann strives to stay upbeat while coping with the way her life has changed.

'I've had moments in my life when it gets really depressing,' she admits. 'You've got to live each day with the thought that something could happen.'

Support from her family helps a lot. That includes having Bill Scharmann - the man she married a year and a half ago - by her side.

'He's been in the ER a lot with me,' she says. 'It's hard for him. We've been together almost 10 years now, and he's been with me through the whole process.'