After receiving an AIP (Acute Intermittent Porphyria) diagnosis at age 16, Heather struggled for years to manage her symptoms, experiencing multiple attacks a year.
Never would have thought I would have liver disease. I began my journey with liver disease in 2011 and despite ongoing treatments and medication, I ended up being hospitalized in May of 2012.
Thinking it was a complication of the surgery, and turns out it wasn’t. I was later diagnosed with primary sclerosing cholangitis (PSC), a rare liver disease.
After a battery of tests, she learned from her Mayo Clinic team that she needed a liver transplant, a message that stunned her, given her history of excellent health.
Working for ALF these past 10 years has been a mission for me. I had NASH, I’ve had a transplant, and every time I am able to offer someone hope, I feel so good.
I didn’t think much about my weight or health during this time. I was diagnosed with a fatty liver and my weight became out of control when I hit 352 pounds.
Julie donated 65% of her liver to a stranger. After looking into living donation, Julie came to find that many transplant centers did not do altruistic liver donations.
We were then introduced by a pediatric GI specialist to a disease named Biliary Atresia. We were told the only way to save OUR baby girl was going through a Kasai Procedure.