Bel
Location: Minnesota
Year diagnosed with PBC: 2012
I was diagnosed with PBC back in 2012 and then progressed to stage 4, the most advanced stage. I am grateful that I recently received a liver transplant. Despite every challenge, I’m focused on doing everything I can to live life to the fullest and be a great mother to my daughter.
Interview conducted in October 2016 and updated in December 2018.
This is my story.
The reason I decided to share my story is because I want people to know that PBC affects Latinas, too. I was born in the Dominican Republic, and even though I’ve lived many places around the world, I think my heritage is a strong part of who I am.
When I first started having symptoms of PBC, I went to a dermatologist for some itching I was feeling on my feet. When my blood work came back and she saw that my liver enzymes were high, I was referred to several doctors and was initially misdiagnosed with autoimmune hepatitis.
“[I]t’s the culture, you know? It’s the food, the music, the way that you raise your children, and that can never change.” — Bel
That doctor treated me like a number, not a person, and I decided I needed a new doctor. I was finally given the correct diagnosis after 3 years and 2 liver biopsies. I might not be a medical doctor (MD), but I do my homework, and I think it is really important to fight for yourself when you need to.
Since then, I’ve traveled far and wide to get treatment that I think is right for me, and I am careful to do everything in my power to keep my health a top priority. In the summers I lecture on cruise ships, and I learned early on how important it is to prepare in advance and make sure I always have the medicines I will need for the whole trip. Working on a cruise ship is ideal because the salt air relaxes me, and since I give only a lecture or 2 a day, I can get the rest I need to help me deal with my fatigue.
“I remember why I had an issue with my first doctor…because he looked at me…and he said, ‘You did a lot of drinking when you were young.’ I said, ‘I don’t even know the taste of beer!’ ... He said, ‘…how much drugs did you do?’ I said, ‘I’m a professor. Professors are like the most boring breed you can come across.’” — Bel
Unfortunately, I also have what my doctor calls “intractable” pruritus, which means that I feel itchy 24/7. Sometimes it gets so bad that I feel like I want to scratch all the way down to my bones. Pruritus this severe is rare and it’s horrible. I belong to a PBC group that has 5000 members, and I only know of 3 people who have this kind of pruritus. And even beyond the physical discomfort, there is social stigma attached to this symptom that makes me want to hide from the world.
“I think one of the worst parts with PBC is the fatigue. People, including your family and your employers, don’t understand. They think you’re tired, you’re lazy…. I have fatigue at 7 AM before I even get off my bed. I am so tired that I literally cannot move.” — Bel
I feel like I’ve had a lot of bad luck in my life, and a lot of challenges to overcome. But I am a fighter, and I am doing everything I can so that I can be there for my daughter for as long as possible. I’ve survived a difficult divorce, worked hard to get a tenured position at my university, and now I am focused on doing whatever I can to fight my PBC. It’s been a rocky road, but I still see a silver lining.
All participating parties, including patients, physicians, and experts, were compensated by ICPT.