Dr. Alessio Fasano, the head of the Center for Celiac Research… (Kim Hairston, Baltimore…)
Doctors at the University of Maryland Center for Celiac Research have received a major boost in their efforts to find new treatments, and even a cure, for the autoimmune disease — a $45 million donation that is a record for the university system.
The donation, directed by the family of a grateful patient from Indiana, was announced Thursday by the center's director, Dr. Alessio Fasano during a press conference in the University of Maryland BioPark in West Baltimore, which was attended by top university administrators, staff and some patients.
Fasano said the money will be used to create a first-of-its-kind institute that could eventually employ up to 200 doctors and researchers. They will not only study the often-misdiagnosed celiac disease but use it as a model to study other related diseases, including diabetes, rheumatoid arthritis and multiple sclerosis.
"Finding enough money is always a problem," Fasano said in an interview about the donation. "What really need for a major breakthrough is thinking out of the box, and this will allow us to do just that."
He said his research shows that the disease is not as rare as once thought. One in 133 people are sufferers, yet most still don't know that the cause of their troubles is eating gluten, a protein in wheat, rye and barley found in much of the human diet. Genes are inherited for the disease, which can surface in children and adults, and which, unlike an allergy, can't be outgrown.
Even a small amount of gluten causes an extreme reaction. The immune system attacks the body, damaging the small intestine, which means nutrients from food are not absorbed properly. The cause is a mystery, and the only treatment is eliminating gluten from the diet.
Symptoms can include cramping, gas, bloating, diarrhea and weight loss. Sufferers also can become anemic, vitamin-deficient, infertile, fatigued and depressed.
Because the symptoms aren't always gastrointestinal, Fasano said, the disease is often misdiagnosed. Only discovered in the 1940s, it would often take a dozen years or more to be diagnosed. And now, even with tests to confirm celiac disease, a lack of awareness can mean that it takes years before a doctor checks for it.
During the press conference, Dr. Jay Perman, president of the University of Maryland, Baltimore, said he expected the celiac center's researcher to collaborate with researchers across the system to more quickly bring new answers to the public about this disease, as well as many others. Dr. E. Albert Reece, dean of Maryland's School of Medicine, said the donation will surely benefit human health.
"The research enterprise we hope to build using the Cafferty's funds will enhance and expand the outstanding research Dr. Fasano and his colleagues are doing," he said. "I am confident this intensive, multidisciplinary approach will enable research to result in real solutions for patients and their families."
In the meantime, Fasano said the Internet and support groups will bring more attention to the disease, prompting more sufferers to ask their doctors about it.
It was nine years of debilitating gastrointestinal symptoms and rashes before Shelia Cafferty was diagnosed. She began to suspect wheat a few years ago. Cafferty, a nurse, put herself on a gluten-free diet, though she doesn't recommend self-treatment because it makes the disease harder to diagnose.
She continued to look for answers, going from doctor to doctor. While looking through research papers online, Fasano's name kept coming up. About a year ago, she and her husband, Ken, who works in mining in Indiana, contacted Pam King, the Maryland center's director of operations, who put them in touch with Fasano.
He took blood and discovered that Cafferty did not have the inherited genes necessary to develop celiac disease. But he was able to diagnose her gluten sensitivity.
So relieved to finally have an answer — and determined for others not to suffer — she and her husband gave $5 million to Fasano's center and steered another $40 million there from a foundation in which they're involved. The foundation declined to be identified.
"There are a lot of people like me, not getting answers," she said by phone from Indiana. She was unable to make the announcement with her husband Ken. "When you don't feel good, it impacts your activity and your daily living."
Ken Cafferty said he and his wife want their money to raise the public's and doctors' awareness, as well as to fund research into treatments and a cure for celiac disease and other autoimmune disorders. "It's heartbreaking to see someone you love suffer," he said.
Elaine Monarch, the founder and executive director of the Los-Angeles based Celiac Disease Foundation, an information provider, knows first-hand how tough it is to live with the disease, before and after a diagnosis.