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New app on Facebook for Children with Liver Disease and Their Families -- Liver Space

 
 

Johns Hopkins Pediatric Liver Center


Biliary atresia is the most serious liver disease of infancy and childhood, accounting for 50% of pediatric liver transplants and 10% of all transplants in adults.  It is the most rapidly fibrosing liver disease and, unfortunately, its cause is still unknown. Doctors at Johns Hopkins are working hard to improve the outlook for children with this disease by a multi-pronged approach: pilot projects with stool color cards given to mothers of newborns to call attention to abnormally pale stools and the need to get medical help to rule out biliary atresia; basic laboratory studies to determine the molecular pathway of the scarring process and how to block it; clinical epidemiology studies to look for viral causes; and antifibrotic treatments to improve the outlook once the diagnosis is made.  Much more research is needed to understand, treat and ultimately prevent this disease. 

Over the past 25 years, the Pediatric Liver Center in the Division of Gastroenterology and Nutrition at the Johns Hopkins Children’s Center treated more than 1,000 young patients with a variety of acute and chronic liver diseases, including biliary atresia.  Severe liver disease is often life-threatening and may necessitate liver transplantation, which can be both life-saving and problematic.  By offering a comprehensive approach to the diagnosis and management of pediatric liver disease, the physicians at the Pediatric Liver Center have two major research goals: preventing the need for transplant by developing treatments for hepatitis and biliary atresia; and maximizing the success of transplants for liver failure of all causes.  The team at the Pediatric Liver Center is committed to helping children suffering from liver disease, along with their families, lead better lives.

News releases from Johns Hopkins Children's Center website:

Winter 2016:   Pediatric Liver News

October 2016:  Announcement about Liver Space -- A Facebook App for Children with Liver Disease and Their Families:
For patients suffering from rare forms of liver disease, finding other people with the same illness can be tough. Even doctors studying these illnesses can have trouble finding enough patients for their research.

Liver Space, a new Facebook application led by pediatric gastroenterologist Douglas Mogul, seeks to address these problems by linking both groups through Facebook.  
Users sign up by visiting apps.facebook.com/liverspace and creating a profile. Notifications about new Liver Space content are then automatically posted to the user’s Facebook account. It also offers self-care tools, like lab results tracking and the ability to connect with others nearby who have the same disease.

2016 Hopkins Medicine -- Health Library Article:  How is a liver, biliary, or pancreatic disorder diagnosed?

July 2015:   Small Study Affirms Accuracy of Free Mobile App that Screens for Liver Disease in Newborns  
 

October 2014:  Poop Color Screening Could Prevent Deaths, Avert Liver Transplants and Lower Treatment Costs in Babies with Rare Liver Disease

April 2014:  The Color of Poop: Stool Guide, Mobile App to Speed up Diagnoses of Life-Threatening Liver Condition in Newborns

 

The Colleen Mitchel Memorial Fund, a component of the Community Foundation for the National Capital Region, was established to support biliary atresia research at the Pediatric Liver Center at Johns Hopkins and to raise awareness of the need for organ donors. 

If you would like to donate to the Colleen Mitchel Memorial Fund, please click here.  Thank you for your support!

 

Johns Hopkins Children's Center

Founded in 1912 as the children's hospital of the Johns Hopkins Medical Institutions, the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, with nearly 95,000 patient visits and some 9,000 admissions each year. Hopkins Children’s is consistently ranked among the top children's hospitals in the nation. Hopkins Children’s is Maryland's largest children’s hospital and the only state-designated Trauma Service and Burn Unit for pediatric patients. Throughout its 100-year history, Johns Hopkins Children’s Center has pushed the boundaries of pediatric medicine by developing and delivering the newest and best methods of treating childhood disease and injury, with a focus on family- and patient-centered care.  

For more information, visit www.hopkinschildrens.org

Donations to the Pediatric Liver Center can be directed toward Biliary Atresia Research and are most gratefully appreciated.