Cecilia
- Year diagnosed with PBC: 2021
- Location: California
Cecilia is a Patient Ambassador, which means she shares her experiences of living with primary biliary cholangitis (PBC) at special educational events.
Patient Stories / Cecilia
This is my story
My name is Cecilia. I’m a clinical psychologist and pediatric neuropsychologist. I have two daughters, and I am living with PBC.
My PBC journey was more like a scavenger hunt. It all started in 2014, one year after my second daughter was born, when I started experiencing extreme fatigue and itching. Even though my primary care physician found elevated liver enzymes in my blood work, they didn’t connect that to my fatigue. Instead, I was referred to an endocrinologist to check my thyroid. For years after that, I was bouncing from specialist to specialist.
The journey to being diagnosed with PBC can make you feel invisible. It’s lonely seeing different doctors and having test after test without any answers. But out of that loneliness grew a fighter.
My fatigue was attributed to my thyroid, my weight, postpartum depression, stress. I tried to keep an open mind about the different diagnoses, but I was never fully convinced. I would follow the advice my doctors gave me, but nothing helped the fatigue.
It really started to take a toll: I had to leave functions early, and I went from working full-time to only being able to work 12 hours a week. I was missing out on memories because of all the naps I needed to take. Then I started experiencing extreme pain in my abdomen.
This is when I decided to start over with a new medical team. My new doctor didn’t dismiss me or refer me away right away. He sat with me for an hour and ordered multiple tests. He was the first person to tell me I might have PBC.
I went to a hepatologist armed with my medical history, research about PBC, and a list of questions. They kept me waiting because they assumed I needed a translator, and when I eventually did see the doctor, they told me it wasn’t PBC, but more likely a fatty liver disease.
I found a new hepatologist, who did more tests. He put forth extra effort to make sure I didn’t slip through the cracks again. Finally, in 2021, the results of my biopsy came in, and I was officially diagnosed with PBC—7 years after my symptoms began.
All participating parties, including patients, physicians, and experts, were compensated by Intercept Pharmaceuticals.