Fiona's story: PBC, my mother and me

In April our founder and CEO, Sjaak, embarked on a unique journey across the world to meet with patients, families, caregivers, patient organisations, doctors, healthcare professionals, healthcare innovators and medical teams. His third stop was in Taiwan where he met a woman named Fiona who had donated part of her liver to extend the life of her mother. Here is her story, written by Fiona herself.

Diagnosis

My mother has been suffering with primary biliary cholangitis (PBC), a rare autoimmune disease of the liver, for almost 40 years. At first, it was difficult for the physicians to diagnose my mother because she does not have anti-mitochondrial antibodies which are found in most PBC patients. It was not until 11 years later when the medicine, ursodeoxycholic acid (UDCA), was introduced that my mother was diagnosed with PBC.

Treatment

PBC has no cure to date. The existing treatments, UDCA and obeticholic acid (OCA), are developed to slow down the deterioration of the liver function.

For decades, while undergoing treatment with UDCA for most of this time, my mother gradually progressed from liver scarring, to fibrosis, then to cirrhosis. A few years ago, she started to show signs of ascites [fluid build-up] in her lower limbs. We knew that it was time for liver transplantation surgery. I donated 60% of my liver to my mother. Thankfully our surgeries went well.

Following the surgery, however, my mother’s PBC recurred. UDCA worked well on my mother for a while until very recently. As UDCA gradially failed to control my mother's PBC like before, we knew that we needed to resort to Ocaliva (OCA) quickly in order to save my mother’s liver graft.

Help is available

We sought the help of everyone.org immediately. With the professional and speedy assistance from everyone.org, especially Dr Aysen Simsek, my mother’s doctor and I were able to finish the paperwork within four days, and we are now waiting for the delivery of the new medicine*.

I highly recommend everyone.org to anyone in need of new medicines. everyone.org understands our needs and treats us like family throughout our communications.

-Fiona, April 2019

*Fiona's mother's medicine was delivered a few days after she wrote this story.