Could You Avoid Protein? Wilmington Nurse Had To Until 2015

WILMINGTON, MA — Until 2015, Erin McGrath was forced to avoid foods with protein.

That includes meat, eggs, dairy, nuts, beans and more.

McGrath, 38 of Wilmington, was born with Phenylketonuria, or PKU, a condition caused by a genetic defect. People with PKU lack an enzyme needed to break down the amino acid phenylalanine; when they eat foods with protein or aspartame, the amino acid can build up, causing brain damage.

Around one in 10,000 to 15,000 Americans is born with PKU, according to the FDA. Newborns are screened for it within a few days of birth.

McGrath and her younger sister, who shared the condition, grew up on a special formula designed for people with PKU.

"The formula that we drank contained 85 percent of our nutrition," McGrath said. "We were fed it from when we were babies."

PKU required constant attention, McGrath said. When she and her sister took trips as children, their mother would have to bring all the food they could have with them. When McGrath went out with friends, she would have to check ahead of time and make sure there was something on the menu she could eat.

"They always would ask me, we're going to this restaurant, does this work for you? And if not, they'd be able to change it," she said. "One time, we tried to go to the Top of the Hub. It was a very expensive place. Since there was only salad on the menu that I could eat, I didn't end up going."

With PKU, McGrath was limited to french fries and salads when she ate out, she said.

In 2015, that changed, McGrath said. She was invited into a trial for Palynziq, a treatment that replaces the naturally-occurring enzyme that people with PKU are missing. McGrath responded to the medication, which was approved by the FDA three years later.

After both went on Palynziq, McGrath and her sister took a trip together.

"We were able to go to Universal Studios and eat whatever we wanted," she said. "That was the freest experience ever."

McGrath now injects herself with Palynziq twice a week.

While being able to eat anything has been freeing, it has taken time to adapt, McGrath said. The texture of some unfamiliar high-protein foods, like chicken, is unpleasant for her, and now that she's on the medication she has to make sure she eats enough protein, rather than ensuring she doesn't eat too much.

McGrath encouraged readers, if they meet anyone with PKU, to be supportive and inclusive, as her friends always were.

"Some people feel like they're different even though you can't see it. They'd rather go out and not eat anything," she said. "The more inclusive you can try and be, the better — the less alone they'll feel."

Christopher Huffaker can be reached at 412-265-8353 or chris.huffaker@patch.com.