There was a time, during the middle of last year, when Bobby Baugh’s body became so swollen and fatigued that he had a tough time even getting a grip on his golf clubs.

Stricken with an extremely rare autoimmune disease called eosinophilic fasciitis, which caused the muscle tissue underneath his skin to thicken, the former TCU player saw his legs and arms swell like stretched water balloons.

“I could still golf,” Baugh, 53, said Tuesday. “But I couldn’t even do a simple thing like crouching to line up my putts.”

Today, the local financial adviser is lining up his shots just fine. Months after being diagnosed with the disease, the cause of which is unknown, Baugh scorched Brackenridge Golf Course with a 6-under 65 to capture the overall scoring crown of December’s Tournament of Champions event held by Golf San Antonio.

Baugh, using clubs with thinner grips to accommodate his still-swollen hands, missed only one green in regulation and needed just 29 putts in outdistancing playing partner Pat Youngs, the reigning senior city medalist, by five strokes.

“He was a warrior out there,” Youngs said.

Baugh, a former Conroe High School standout whose great uncle is NFL Hall of Famer Sammy Baugh, credits his faith – and golf – as major reasons.

The one-time youth pastor and motivational speaker has seen his psyche and golf swing tested in concert over the last year. It began when a lingering sinus infection and muscle and joint soreness sent him to the doctor. Last summer, a physician at the famed Mayo Clinic in Minnesota diagnosed him with a disease that has been discovered in fewer than 350 people over the past 35 years.

“No question, the game helped me, and it does,” Baugh said. “The challenge of golf – you can play good one week, and crappy the next – you just never get it. There’s always the challenge to be better, more consistent, a better putter, a better chipper, a better whatever.

“I love playing so much that I was ready to do whatever exercise and stretching I needed to do to play.”

Fortunately for Baugh, that was just what the doctor ordered.

Along with heavy medications designed to stymie the onset of the disease, he was ordered to attend physical therapy, undergo aggressive stretching sessions and to get out and exercise.

“I told the doctor that I was playing a lot of golf, walking the course three or four times a week, and he said that’s perfect,” Baugh said, chuckling. “I told him, ‘Doctor, I think I can do that.'”

His love affair with the game extends back to his childhood in Conroe, where a mentor, former PGA Championship runner-up Don Massengale, helped nurture his game. The result was a Class 4A state runner-up finish his junior season at Conroe High and an eventual transition to the collegiate alma mater of Massengale and his famous relative, Sammy Baugh.

“That was a good decision,” Bobby Baugh said. “I loved it there.”

At TCU from 1976-81, Baugh became a two-time All-Southwest Conference selection and often played in the same tournaments as University of Houston star John Stark, now a past Greater San Antonio senior titlist.

After graduating, Baugh was youth pastor for five years at Northeast Bible Church before becoming a national speaker for a San Antonio-based youth crisis hotline service. For more than a decade, he has worked for Planto Roe Financial as an adviser.

“You know, unlike other sports, golf ultimately is up to you,” said Gene Roe, a partner with Planto Roe who grew up with Baugh in Conroe. “You can’t miss a layup, and somebody gets a rebound and puts it back in for you. For the competitive golfer, second place is a loss.

“I think that kind of thing, for Bobby, ultimately helped in what he’s gone through. He’s very competitive by nature.”

Today, Baugh takes the drug Enbrel, famously endorsed by golfer Phil Mickelson in his battle against psoriatic arthritis, and it has helped significantly in reducing Baugh’s muscle and fascia tightness and swelling. His prognosis for an eventual full recovery is excellent.

“I do know one thing,” he said. “I don’t whine as much about a bad round as I used to.”

– Richard Oliver (source: My San Antonio)

Watching her family enjoy dinner when all that awaited her was a special hypoallergenic formula delivered through a feeding tube in her stomach was initially “horrible, unbearable,” says Ashley Zundel.

Today, four years after her diagnosis with a rare food allergy known as eosinophilic gastroenteritis, the 13-year-old can abide the “tempting smells” and no longer retreats to her bedroom at suppertime. Her family avoids foods for which she has a weakness: pizza, hamburgers and baked goods.

But there’s no avoiding the expensive, milky formula, which isn’t uniformly covered by private insurance but remains a primary source of nutrition for Ashley and hundreds of Utahns like her.

For three years running Ashley’s mom, Tammy Zundel, has lobbied for legislation requiring insurers to cover the formula. Rep. Carol Spackman Moss, D-Salt Lake City, is taking another stab at a bill this year.

Past attempts have been resisted by mandate-averse Republican leaders and insurers who argue it will raise the cost of health insurance for individuals and small businesses. But this year, proponents have a different strategy.

“I used to think doing the right thing by kids was argument enough. I was naive,” said Tammy Zundel, who has spent the past year trying to convince insurance executives that paying for formula will save them money.

Better disease management means fewer complications requiring hospital stays and surgeries, which insurers do cover, she said.

Nudging insurers toward voluntary coverage is preferable to changing state law, which would effect only 33 percent of all health plans sold in Utah, the individual and small group plans regulated by the state. But Moss said only a few companies “have come to the [bargaining] table,” so she’s moving ahead with legislation.

Insurers say the U.S. Food and Drug Administration classifies formula as a food, not a drug. Covering food substitutes “would be similar to asking Utahns who have health insurance to pay the grocery bill of those individuals who have some type of food allergy,” said Scott Thompson, a spokesman for Regence BlueCross BlueShield.

Moss argues these formulas are no mere supplement, but “medically necessary, the standard of care for the sickest of the sick.”

Thirteen states, including Texas and Arizona, mandate coverage for amino acid-based elemental formulas for various diagnoses, including eosinophilic disorders, short bowel syndrome and allergies to proteins in milk.

The laws have had minimal to no financial impact, said Moss. In Ohio, a state senator predicted legislation would raise health insurance premiums by 1.6 pennies a year for the average family.

Moss is limiting her bill to eosinophilic gastrointestinal disorders (EGDs), which effect 1,375 Utahns.

EGDs are characterized by high levels of eosinophils in the throat, guts or colon. A type of white blood cell, eosinophils help the immune system fight infections and parasites, but in people like Ashley they mistake food for these invaders. Left unchecked, they attack the body and cause tissue damage.

It’s a lifelong disorder that can be easy to overlook, because it’s not well understood.

“But there’s no doubt about the diagnosis, and there’s no doubt about the effectiveness of the formula,” said Gerald Gleich, an immunologist, allergist and expert on EGDs who retired from the Mayo Clinic a decade ago but logs 10-hour days treating patients at the University of Utah.

Though available without a prescription, elemental formulas such as Vivonex, Neocate and EleCare are a breed apart from the store-bought infant variety, said Gleich, who supports Moss’ bill.

“Devoid of intact food substances, namely proteins, complex carbohydrates and fats, these products only contain amino acids and simple sugars and do not provoke allergic reactions,” he explains.

Fewer than a third of those diagnosed require formula for longer than five years. It’s generally a short-term solution enabling patients to heal, slowly re-introduce foods and, through a process of elimination, determine which they can tolerate.

In many patients the disorder effects only the esophagus, making it hard to swallow. Some respond to medications such as steroids. Not Ashley, who has it in her stomach, intestines and colon.

The Orem teen has reacted violently to food nearly all her life. Even the smallest meals leave her vomiting, with persistent diarrhea or doubled over in pain.

She can now tolerate about 14 foods: a bland diet of turkey, white pork, rice and a handful of fruits and vegetables.

It took years of testing, scopes and biopsies to rule out irritable bowel syndrome and celiac and Crohn’s disease. By the time she was diagnosed, “we were desperate,” said her mom, emotionally describing how Ashley’s skin had turned gray and her hair patchy due to malnutrition.

“Sometimes I had to carry her home from school because she was too weak to walk,” Tammy said.

The feeding tube and formula were a last-ditch solution, further complicated by a job loss in the family. Ashley’s dad, Dallyn, an illustrator, had been laid off and given a severance package that included health benefits. But the insurer refused to cover the formula, and when the Zundels sued to require payment, the employer threatened to yank the severance.

Each insurance company has its own policy. Some cover oral nutrition only as part of a hospital stay.

“They’ll pay for the stomach pump, tubing and bags, but not the formula,” said Tammy Zundel. They’ll also pay to hospitalize someone who has become so nutritionally deficient they need to be fed by IV.

One night of IV feeding costs about $5,000, equivalent to a year’s worth of formula for the average ESD patient, she said.

The family dropped the lawsuit and eventually were able to sign their kids up for Medicaid, which covers the formula.

A life saver that has helped Ashley thrive and avoid frequent hospital stays, the formula has meant financial ruin for the family and an unnecessary burden on taxpayers.

“It’s not how I wanted things to be,” said Dallyn Zundel, who teaches design but has turned down more lucrative job offers in order to keep his daughter on Medicaid.

But like cooking separate meals and raising turkeys in the back yard, which supply Ashley with eggs she can digest, and lobbying for “fair treatment,” said Tammy Zundel, “You do what you need to do for your kids.”

– Kirsten Stewart (source: The Salt Lake Tribune)