From Manila to Taipei: The story of a daughter’s determination to find the best course of treatment for her mother.

I’d like to start by saying: Thank you.

Thank you for tuning in every week to read these amazing patient stories from around  the world. Stories that show how we all love and live life to the fullest despite the obstacles we sometimes face .

Continuing on my world tour, I left the Philippines with a full and heavy heart  and headed to Taiwan to hear a story of hope and determination.

As soon as I arrived in Taipei, I had the pleasure of meeting Fiona, the daughter of a patient diagnosed with a rare liver disease known as PBC (Primary Biliary Cholangitis).  

PBC is an autoimmune disease of the liver. It results from slow, progressive destruction of the small bile ducts of the liver, causing bile and other toxins to build up in the liver, a condition called cholestasis. It affects mostly women, but more men are now being diagnosed. The disorder usually becomes apparent during middle age, and initially affects individuals between the ages of 45 to 65 years. It has been estimated that PBC is one of the most common autoimmune diseases, affecting nearly 1 in 1000 women over the age of 40.

Fiona’s mother, who is 70 years old, has been living with the disease for the past 40 years. It was very difficult for her to get a proper diagnosis because she did not have the common anti-mitochondrial antibodies that are found in most PBC patients.  

At the time of her diagnosis, she followed a treatment which showed good results by slowing down the deterioration of the liver function. With time, however, her condition worsened from liver scarring, fibrosis and finally cirrhosis. Fiona made the decision to quit her job to be able to fully tend to her mother’s needs.

After showing signs of ascites (an abnormal buildup of fluid in the abdomen), it was critical for her mother to get a liver transplant. Without any hesitation, Fiona donated 60% of her own liver to save her mother’s life.

After the transplant, it was vital that her mother should start a new treatment to safeguard the condition of the donated liver.

This is how Fiona found us. She was hoping to find another treatment option that could improve her mother’s quality of life.

I am proud of our team who did a great job in supporting, sourcing and delivering the elsewhere approved medicine that Fiona’s mother so urgently needed. Coincidentally, the treatment was delivered to her mother while I was meeting with Fiona!.

It is interesting to share that throughout the years, Fiona was also able to build a strong relationship with her mother’s surgeons and doctors allowing her to get the full medical attention she needed in an environment where healthcare professionals are incredibly busy.

Fiona was so touched and inspired by our mission that she became a TheSocialMedwork ambassador and advocate.  She has since been speaking to doctors and patient foundations and volunteering at health foundations to help as many patients as possible.

I am touched by Fiona’s dedication to our mission of helping patients everywhere get access to critical medicines they need and look forward to reconnecting with her soon.

Stay tuned for next week’s special story all the way from Santa Cruz, USA.

-S