Lindsay’s Story: Life, Motherhood, and PSC

Lindsay was diagnosed with PSC aged 24.

Two countries, two pregnancies, and two biliary drains later, she shares her story in her own words for Rare Disease Day.

My Diagnosis

Hi I’m Lindsay, I was diagnosed with PSC in 2009 at the age of 24. I was living in Liverpool England and my Dr at the time gave me very little information about it. So I just didn’t really think about it.

By 2015 I was living in America, and I decided it was probably time to start thinking more about my diagnosis. Luckily for me, everything was pretty ‘Normal’.

Starting a family

In 2018 my husband and I welcomed our first baby to our family. I itched terribly during my pregnancy. After research and lots of questions to my Hepatologist, I was diagnosed with Intraheptatic Cholestasis of pregnancy (ICP). I was induced at 36 weeks and our daughter was born healthy.

In 2020 I started itching again. I was pregnant. I was induced at 37 weeks and our son was born healthy in 2021.

Life with PSC

By May 2024, I started to feel ‘off’. By August I was consistently having cholangitis attacks. They consisted of right shoulder pain, sternum pain, RUQ pain, constant nausea & extreme fatigue.

I had several ERCP’s & stent placements. They helped short term.

In March 2025 I was referred to Interventional Radiology. In August 2025, I had two external Biliary drains placed with catheter bags. They were painful, I felt useless, disgusting & embarrassed. They scared our children and they hated them. I lost more than 20lbs, I cried.

In October 2025, with drains in place, I went back to my local gym 180-Red Fit. Physically I felt better, mentally I didn't. I struggled. Had it not have been for the positive words & support from my coach Ian, I would have left. I still want to leave sometimes.

My drains were removed in January 2026. I still have several procedures and hospital appointments ahead of me.

PSC is an invisible, incurable disease. It’s unfair.

I’ll probably need a liver transplant in the future, I may get colon cancer or some form of liver cancer. Who knows???