Casey’s Story

Wilson Disease


A SIMPLE CASE OF TENDONITIS

Casey began dancing at a young age so it was no surprise when she began experiencing hip pain at 11 years old. Her parents took her to the pediatrician but all they could find was inflammation, leading doctors to believe she had a simple case of tendonitis – but – considering her age, Casey’s doctor ordered blood work, just in case.  

GOOD THING SHE DID

Blood work confirmed doctor’s suspicions about Casey’s hip – however – it also revealed elevated liver enzymes. Her doctor ran the tests again and the results were confirmed: elevated liver enzymes. Casey’s pediatrician referred her to a liver specialist and after multiple tests, she was diagnosed with Wilson Disease. Casey said, “If it hadn’t been for that blood test, I probably wouldn’t have been diagnosed – I had no other symptoms.” Casey ultimately received a successful liver transplant in 2019 and is doing well.  

FAST FACTS ABOUT WILSON DISEASE

  • Wilson Disease is an inherited condition that causes the body to retain excess copper 
  • About one in 30,000 people have Wilson Disease 
  • Wilson Disease is present at birth but symptoms usually appear between the ages of 6 and 20

SO MANY LIVER DISEASES GO UNDETECTED

Being proactive about your health is key. Casey said, “my advice for someone newly diagnosed would be to stay active in your treatment. It’s important to take your medicine and eat properly. It may be hard, especially if you’re younger, so make sure you lean on friends and family for support. 

PAYING IT FORWARD

Casey is now 21 years old and an intern with American Liver Foundation’s Events Team. She graduated with a BS in Business Management from Roger Williams University in RI. She said, “I love my internship. The people I work with are amazing and they’re always helping me become a better professional and person. The work is really rewarding and I look forward to working on the projects I’ve been given.” 

Thank you, Casey, for volunteering your time as an intern and for sharing your story with the liver community nationwide. We are grateful for your support and dedication to the Events team and cannot wait to see what you do in the future.  

March is Wilson Disease Awareness month. For more information about Wilson Disease or to access ALF’s resource center, please visit our website

Last updated on August 12th, 2022 at 11:08 am

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