Bel
- Year diagnosed with PBC: 2012
- Location: Minnesota
Patient Stories / Bel
This is my story
My name is Bel. I was diagnosed with primary biliary cholangitis (PBC) back in 2012 and then progressed to 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.
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 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.
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, 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 two a day, I can get the rest I need to help me deal with my fatigue.
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 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 Intercept Pharmaceuticals.