Patients, caregivers and experts gather for Sacramento event targeting PSC.

Emily Spannagel was a college freshman 12 years ago when she first learned that she had a rare liver disease that could lead to liver failure and eventually require a transplant. Her illness, primary sclerosing cholangitis (PSC), results in inflammation that progressively scars and narrows the liver’s bile ducts. The disease has dictated nearly every aspect of her life since.”When I was given the diagnosis, I was in a complete state of denial,” said Spannagel, now a stay-at-home mother with an energetic 4-year-old, who has grappled with tough decisions about career and family and suffers from severe fatigue on a daily basis. “It was extremely difficult to hear that I was going to need a liver transplant in my lifetime.”

Spannagel will be among several hundred people expected to attend the seventh annual “PSC Partners Seeking a Cure” conference, which brings together patients and caregivers, and features presentations by international health experts, including Spannagel’s physician, Christopher Bowlus, an associate professor of internal medicine. The event begins on Friday, April 29, and continues through May 1 at the Sheraton Grand Hotel in Sacramento, 1230 J St., Sacramento.

Conference attendees will learn about the latest research and treatments into the incurable disease, which is estimated to affect about 6-in-100,000 people. There is no known cause for PSC, but it is thought to be related to an autoimmune disorder. Current treatments help control PSC symptoms, which include fatigue, itching and severe jaundice.

“Most patients with early PSC have no symptoms, and its presence is recognized only because of abnormally elevated blood levels of liver enzymes that often are analyzed as part of routine blood tests for physicals,” said Bowlus, who specializes in liver diseases.  “It’s a disease that is much more common among men than women, but it has equally challenging impacts on physical health.”

In addition to Bowlus, the conference includes UC Davis Health System experts Eric Gershwin, distinguished professor of medicine and the Jack and Donald Chia Professor of Medicine, Division of Rheumatology, Allergy and Clinical Immunology; John McVicar, professor of surgery and a liver transplant expert; Natalie Torok, associate clinical professor, Division of Gastroenterology and Hepatology; and Carlo Selmi, assistant professor of medicine.

PSC sufferer Spannagel has undergone a procedure to widen the strictures in the bile ducts and takes antibiotics to fight infections there. Both are temporary measures and do not stop the progression of the disease. For the Sacramento resident, the worst thing about PSC is the uncertainty of when or how the disease might develop. She noted that patients often wait with a laundry list of symptoms that show the disease’s progression, such as fevers, hypertension, esophageal varices (dilated veins), and other problems. They also must endure the wait for the day when their MELD (Model for End-stage Liver Disease) scores are high enough that they can be put on the liver transplant list.

“Being positive is key,” said Spannagel, who is looking forward to the conference and anxious to learn more about the ongoing research and any potential treatments on the horizon. “Because there are still so many unanswered questions about PSC, any new information is important. It will be truly uplifting to be in a room full of PSCers and know that we are in this fight together.”

About PCS Partners Seeking a Cure
PSC Partners Seeking a Cure is a volunteer organization formed in 2005 to provide primary sclerosing cholangitis (PSC) patients and their caregivers with education and support as well as raise funds for research into the origins of the disease and finding a cure for it.

About UC Davis Medical Center
UC Davis Medical Center is a comprehensive academic medical center where clinical practice, teaching and research converge to advance human health. Centers of excellence include the National Cancer Institute-designated UC Davis Cancer Center; the region’s only level 1 pediatric and adult trauma centers; the UC Davis MIND Institute, devoted to finding treatments and cures for neurodevelopmental disorders; and the UC Davis Children’s Hospital. The medical center serves a 33-county, 65,000-square-mile area that stretches north to the Oregon border and east to Nevada. It further extends its reach through the award-winning telemedicine program, which gives remote, medically underserved communities throughout California unprecedented access to specialty and subspecialty care. For more information, visit medicalcenter.ucdavis.edu.