Having a rare liver disease can be tough for anyone, especially a child

Meet Mya Longacre, an ALF patient volunteer who has been navigating her journey with liver disease since birth. Mya said, “Managing chronic liver disease is all I’ve ever known. At just eight weeks old, I was diagnosed with biliary atresia (BA), a rare liver disease affecting newborns. In a way, being diagnosed with liver disease at a young age has been a blessing in disguise – I don’t know any different – however, it did make for an interesting childhood experience.”

Rare diseases are those which affect a small number of people compared to the general population. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans at any given time.

Fast facts about Biliary Atresia

• Approximately 15,000 American children are hospitalized annually with a pediatric liver disease.
• BA is most seen in full-term infants, not in premature babies.
• Pediatric liver disease continues to be under-recognized or diagnosed late due to a lack of symptoms, specifically in the early stages.
• 10-20% of infants with BA have abnormalities in other organs, such as the heart or spleen.

Being “different” can take a toll on a child’s social and emotional health. Mya said, “For me, the biggest struggle was my enlarged spleen. I spent a lot of time at the hospital for routine check-ups, endoscopies and more. I had to wear a spleen guard during recess and I was unable to play any contact sports. It was hard for me to understand why I had to look different on the outside – why couldn’t I just be like everyone else? Thankfully, I was fortunate to have an incredible network of family, friends and doctors around to support me, but there are many children out there who do not.”

Mya said, “Today, I am 23 years old and spend my time traveling the world, teaching yoga, and preparing to go back to school for a Master of Acupuncture degree and a Doctorate of Naturopathy degree. While liver disease had a profound impact on my day-to-day life as child, it made me who I am today and I wouldn’t change that for the world.”

Today is Rare Disease Day. Everyone’s journey with liver disease is unique but no one has to navigate it alone. For more information about rare liver diseases and resources available, please visit liverfoundation.org.