Living with Mitral Valve Prolapse Syndrome —
One Teen’s Story
It took four doctors and a whole summer to figure out what was wrong with Anne Kemmerer. In the summer of 1998, the otherwise healthy, active 15-year-old suddenly became seriously ill with an array of baffling symptoms.
"We didn’t know what it was," said Anne, a sophomore at Girls Preparatory School in Chattanooga, Tennessee.
"I was having headaches and a bunch of other problems. I pretty much spent the whole summer in bed."
For Anne, a member of her school’s cross-country, basketball, and track teams, a summer in bed meant losing valuable training time. Anne was anxious to leave her illness behind and get back
to practice.
But a diagnosis — much less effective treatment — wasn’t easy to come by. Anne went to three doctors, including her pediatrician, who came up with varying diagnoses for her headaches, dizziness, nausea, and lightheadedness. One theory held that she had an infection in the lining of her stomach. But Anne’s mother began to see something familiar in her daughter’s symptoms — and in the doctors’ inability to come up with a firm diagnosis.
A Family History
In the way that perhaps only a parent can, Jane Kemmerer began to see a pattern in her daughter’s symptoms — and in the Kemmerers’ case, it was a very familiar pattern. A patient of the Mitral Valve Prolapse Center for the past several years, Jane realized her daughter had some of the same symptoms she herself had suffered for decades and that her mother, Anne’s grandmother, had also experienced.
"I’ve had mitral valve prolapse syndrome symptoms for about 35 years, since I was my daughter’s age," Jane recalled. "I have different symptoms, and more symptoms, but the similarity was there."
Jane Kemmerer’s own medical history might sound familiar to many MVPS patients: "About seven or eight years ago, I came across an article in the Chattanooga Times
by one of Dr. Watkins’s patients, describing her symptoms and experiences. I recognized right away that that was something I’d had for years. I clipped out the article and carried it around in my wallet.
"Then a year later, when I started going through a rough time with my symptoms, there wasn’t a local doctor who was able to help me. So I called the Mitral Valve Prolapse Center.
"Since I’ve been treated at the center, there’s been just a huge improvement. They’ve saved my life — I’m a new
person."
Like many MVPs patients, Jane had suffered for years not knowing what was wrong — a fate her daughter has been spared through early detection. Now that she has a diagnosis and appropriate treatments, Jane says, "It’s linked up so many of my symptoms. It’s just amazing — amazing that they could be so interconnected, amazing being able to keep everything in balance.
"I wish I could have found out 35 years ago."
Making a Recovery
As happens for many MVPs patients once the diagnosis is made, treatment was relatively simple and effective for Anne Kemmerer.
"We adjusted my diet," said Anne. "No caffeine, less sugar, and so on. I also take a beta blocker."
One of the most important aspects of MVPs treatment was a lifestyle change Anne didn’t
have to make: adding exercise to her daily routine. As an athlete, Anne was already extremely active and in top physical condition, practicing every day. And, said her mother, "Anne’s excellent physical shape helped reduce her symptoms."
Despite regular exercise and diet changes, the road to recovery hasn’t been entirely smooth. A week before she was set to compete in the state cross-country meet in November 1998, she collapsed during a race due to severe anxiety.
"We were very concerned about whether I’d be able to run in state," said Anne. With some adjustments to her medication, however, Anne did run in that meet — placing third overall, setting a school record for that particular course, and helping her team claim the state’s cross-country title.
Mitral Valve Prolapse Syndrome "Not a Big Deal"
A diagnosis of MVPs might sound like a lot for a 15-year-old to handle, but Anne Kemmerer seems determined not to let it affect her attitude. Her advice to other teens with MVPs?
"Looking back, I realize I’d had symptoms for much longer than I’d thought. I feel 100 percent better than I did before I got treatment — but I’m still the same person as before. It’s not something that’s going to change your life. It can be troublesome, but you just have to exercise and eat well."
That’s good advice for anyone — but most importantly, it displays the positive outlook that’s so vital to overcoming the potential limitations of dysautonomia and MVPs Anne Kemmerer’s condition has — literally — not slowed her down one bit.
Helping Teens Eat Right
With adolescence comes freedom — freedom to drive, to date, to hold a part-time job — and also greater autonomy. Teens today are busy, with sports, clubs, social activities, and jobs often running well into the evening, and they’re free to fill their hours — and their stomachs — however they see fit.
Along with increasing freedom, changes in the traditional family mean that teens are taking on greater responsibility for how, when, and what they eat. Many teenagers do their families’ grocery shopping, and many more are on their own when it comes to planning and preparing meals.
For teens with MVPs/dysautonomia, that could be bad news. The typical teenage diet of sodas, fast food, and sweets includes many items that can increase MVPs symptoms. In addition, adolescents have special dietary needs — it takes extra iron and calcium, among other nutrients, to complete a growth spurt.
But food is often a loaded issue for teenagers, whose eating habits may be influenced by peers, the desire to be thin, and other factors. How can a teen with MVPs stay healthy, reduce his or her symptoms, and still have fun? And what can parents do to help their kids eat
better?
The solution, according to Trina Smith, R.N., cardiac and pulmonary rehab coordinator at Birmingham Baptist Medical Center–Montclair, is simply to make better choices. "Don’t think of it as a special diet," warns Smith. "Think of it as learning to make better choices — maybe not always 100-percent correct choices, but better
choices."
Rather than banning foods they enjoy, Smith suggests adolescents try to find balance in their diets. By making consistently good choices, teens can indulge occasionally without harming their health or increasing their symptoms. "Don’t say ‘You can never have this again.’ Instead, have it less often, and balance it with good things," says Smith.
Those good things include fresh fruits and vegetables, which can be made more appealing by buying them in convenient ready-to-eat forms. Low-fat dressings and yogurt dips add flavor without adding excessive fat. Supermarket shelves are packed full of low-fat, low-sugar snacks.
Teens with MVPs/dysautonomia don’t need to completely change their diets, however. Pizza, burgers, and fries, though high in calories and fat, aren’t particularly harmful. "The sweets and caffeine are probably the worst things for them in terms of MVPs symptoms. Pizza and fast food might make you fat, and of course it’s good to begin early with a healthy, lower-fat diet, but they’re not so likely to aggravate symptoms."
Because drinking adequate water (at least 8–10 glasses per day) is so critical to MVPs treatment, says Smith, adolescents need to learn to love it. "Bottled water is a good choice, because it’s ‘cooler,’ and it often does taste better than tap water," says Smith. Adding a slice of orange, lemon, or lime might also make water more palatable.
Recent studies have shown that today’s teens drink one to two cans of soda per day; in one study, 5 percent of the group studied drank three to five cans a day. That’s a lot of sugar and caffeine — two things MVPs patients must avoid.
It is
best to cut out sodas entirely — but there’s room for compromise. "Choose Sprite or 7-Up instead of Coke or Mountain Dew," suggests Smith. While Sprite, 7-Up, and similar drinks contain lots of sugar, they don’t have caffeine. Smith also says that diet sodas are acceptable, "but in moderation. That’s really the key."
After all, eating a healthier diet isn’t about taking the fun out of eating. Instead, Smith says, the goal should always be balance. "If you can’t live without it, then have it, but move on from there to healthier choices. Learn how to add some of the good things to your diet, too."
Background information for this article came from CNN’s Website, cnn.com, and from "Trends in Teen Nutrition," an article on the International Food Information Council’s Website, ificinfo.health.org
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