Week after week, Pankaj “Jay” Pasricha and his Johns Hopkins colleagues at the Amos Food, Body and Mind Center see patients whose lives have been turned upside down by motility disorders.
While their symptoms may vary, all of these patients have one thing in common: the nervous system of the gut, known as the “enteric nervous system,” has gone awry. The result? These patients – men and women, young and old – must cope daily with debilitating chronic symptoms, including abdominal pain, bloating and distention, nausea and vomiting, and diarrhea and constipation.
Many patients who suffer from motility disorders have seen specialist after specialist, over many years, only to be told that the cause of their pain and discomfort is unknown.
When they arrive at the Amos Center, they find hope. Launched in 2014 with the help of a generous gift provided by Mrs. Courtney Amos and Mr. Paul S. Amos, the center is one of a few places in the world dedicated to studying the links between diet and disease, and also the role of good and bad bacteria in making us sick and keeping us healthy.
“In the Amos group, we are working to figure out what causes the motility disorders our patients come to us with, so we can work toward finding the best treatments,” says Pasricha, who is also director of the Center of Neurogasterenterology at Johns Hopkins.
“Part of this process,” he explains, “is identifying patterns of symptoms that occur together in certain patients, which provides clues into what the underlying cause may be and helps point us in the right direction in terms of selecting a treatment.”
The Amos Center is one of a few places in the world dedicated to studying the links between diet and disease, and also the role of good and bad bacteria in making us sick and keeping us healthy.
Recently, Pasricha has described a new syndrome based on his team’s observations of a particular subgroup of patients. He’s dubbed this syndrome “JAG-A,” for the conditions it encompasses. The acronym stands for:
“Describing the JAG-A syndrome and the criteria by which a patient may fit into the group has helped us identify patients who may have an underlying autoimmune problem that is contributing to or causing their motility disorder,” says Pasricha.
“This has helped guide our decision to treat them in a new and different way—with an infusion medication called IVIG.”
Doctors have typically used IVIG to treat immunodeficiencies, certain inflammatory conditions and nervous system conditions, such as Guillain-Barre or stiff person syndrome. “Currently,” says Pasricha, “its only rarely been tried in patients with motility disorders.”
Many of those who have completed a four-month trial of IVIG infusions have reported significant improvement in their motility symptoms. “This lends support to our hypothesis of an underlying autoimmune condition at least in some patients with motility disorders,” says Pasricha.
So far he and his team have treated 10 JAG-A patients with IVIG, “and we anticipate beginning many more in the near future,” he says. The good news? Many of those who have completed a four-month trial of IVIG infusions have reported significant improvement in their motility symptoms.
“This lends support to our hypothesis of an underlying autoimmune condition at least in some patients with motility disorders,” says Pasricha.
The Amos Center team has an ongoing study tracking the progress of patients who undergo IVIG infusion and will be sharing the results of their work once the study is complete.
“Ultimately, we hope to help not only the patients we see but countless others through our research efforts at the Amos Center,” says Pasricha.
Don Willett November 11th, 2017