Families Explore Methods for Treatment and Coping With Devastating Effects of Rare Liver Disease
LOS ANGELES--(BUSINESS WIRE)-- More than 100 patients and families who must deal with the daily effects of a rare devastating liver disease known as biliary atresia gathered together on Oct. 15 at The Saban Research Institute of Children’s Hospital Los Angeles for a day of education and support.
Pediatric surgeon Kasper Wang, MD, Children's Hospital Los Angeles, holds patient Isabella Sanshuck, age 1, during Biliary Atresia Day at Children's Hospital Los Angeles. The event provided education and support to patients and families dealing with the rare liver disease. (Photo: Business Wire)
Known as Biliary Atresia Day, the first-of-its-kind event sponsored by Children’s Hospital Los Angeles allowed participants to learn from physician experts at the hospital as well as from each other. Physicians provided lectures on current treatments and issues facing patients while long-term survivors told personal stories of living with the disease.
“We showed families that they are not alone in their struggles,” said pediatric surgeon Kasper Wang, MD, Children’s Hospital Los Angeles, who is also co-author of a recent national research study on the disease. “This was such an important event for us to hold for so many reasons. As a liver transplant center, the event accomplished our primary goals of offering education and support.”
Biliary atresia is a liver disease affecting newborns with malfunctioning bile ducts. The ducts are responsible for transporting the waste away from the liver to the gallbladder where it is stored before entering the digestive system. In the case of biliary atresia, the ducts are either not properly formed or are blocked, and immediate surgery is necessary to drain bile from the liver. Even with early intervention, newborns can still face up to a 50% risk for liver failure that requires a liver transplant in the future. Biliary atresia is rare in that only 1 in 10,000 babies are born with the disease annually, making it about as common as childhood leukemia. Approximately 130 cases have been documented via a national database and Children’s Hospital Los Angeles treats 10 to 12 cases per year.
“Biliary Atresia Day was a remarkable event for our patients and their families as well as all of us here at Children’s Hospital Los Angeles,” said Brent Polk, MD, who serves as chair of Pediatrics at the hospital and is also the director of The Saban Research Institute. “We heard so many emotional stories. One of the unexpected benefits of the event was the networking among families that took place where people were able to find support and comfort with each other.”
Families were extremely grateful for the opportunity to learn more about the disease and share their experiences with other families and clinicians.
“The impact of biliary atresia on our family is immeasurable and we are still trying cope with its aftermath,” said one parent. “It certainly turned our lives upside down when we learned that our son has the disease. Every minute of every single day, we are checking, monitoring and hoping that our youngest child is okay. My two other kids are trying to cope with seeing less of their mommy and daddy and with understanding why they have to compromise a lot of things because of their little brother. We appreciate all of the care and support we have received from everyone at Children’s Hospital Los Angeles.”
As part of the education sessions at the event, Children’s Hospital physicians Danny Thomas, MD, division head, Gastroenterology and Nutrition, pediatric surgeon Yuri Genyk, MD, and Dr. Wang all provided lectures to families on biliary atresia covering current research, medications and complications, and liver transplant. Students from Crescenta Valley High School baseball and volleyball teams volunteered to care for the kids while their parents attended the educational lectures. The success of the day’s event will likely lead the hospital to hosting similar educational sessions on the topic in the future. For more information about the biliary atresia program at Children’s Hospital Los Angeles, call 866-58LIVER (866-585-4837) or visit the hospital website at: http://www.chla.org/LiverResearch.
About Children’s Hospital Los Angeles
Children's Hospital Los Angeles has been named the best children’s hospital in California and among the best in the nation for clinical excellence with its selection to the prestigious US News & World Report Honor Roll. Children’s Hospital is home to The Saban Research Institute, one of the largest and most productive pediatric research facilities in the United States. The hospital is also one of America's premier teaching hospitals through its affiliation since 1932 with the Keck School of Medicine of the University of Southern California.
For more information, visit www.CHLA.org. Follow us on Twitter, Facebook, YouTube and LinkedIn, or visit our blog: www.WeAreChildrens.org.
Photos/Multimedia Gallery Available: http://www.businesswire.com/cgi-bin/mmg.cgi?eid=50034732&lang=en
CONTACT:
Children's Hospital Los Angeles
Janet Dotson, 323-361-5979
[email protected]
KEYWORDS: United States North America California
INDUSTRY KEYWORDS: Health Hospitals Children Consumer Family General Health
MEDIA:
| Photo |
| Pediatric surgeon Kasper Wang, MD, Children's Hospital Los Angeles, holds patient Isabella Sanshuck, age 1, during Biliary Atresia Day at Children's Hospital Los Angeles. The event provided education and support to patients and families dealing with the rare liver disease. (Photo: Business Wire) |