Intercept Pharmaceuticals’ Post

Name: Intercept Pharmaceuticals on LinkedIn: #pbc #rarediseases
Uploaded: 2024-02-29T16:55:54.641Z
Channel: Intercept Pharmaceuticals
Description: Over several years, Cecilia was bounced from doctor to doctor until she found someone who finally listened to her concerns and properly diagnosed her with primary biliary cholangitis (#PBC). Ensuring patient voices are heard and understood is a critical aspect of healthcare, and especially important when diagnosing and managing #rarediseases. Watch Cecilia recount her experience with PBC.

Intercept Pharmaceuticals

64,478 followers

7mo Edited

Over several years, Cecilia was bounced from doctor to doctor until she found someone who finally listened to her concerns and properly diagnosed her with primary biliary cholangitis (#PBC). Ensuring patient voices are heard and understood is a critical aspect of healthcare, and especially important when diagnosing and managing #rarediseases. Watch Cecilia recount her experience with PBC.

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My name is Cecilia and I am from San Diego, CA. I am trained as a clinical psychologist and pediatric neuropsychologist. I'm a mom of two girls, they're 10 and 13, and I have PBC. My husband and I love to just kind of do anything with water activities with the girls. We love to be at the beach. After my daughter Ella was born in 2013, I started to have really bad fatigue and itching, so I went to the doctor immediately and they kind of just put it off as postpartum. In my heart, I knew that it was something more because I was literally having to take time away from my family to take naps, and it was above and beyond what I had ever felt with my first daughter. I went from working 45-50 hours a week to only being able to work maybe 12 hours a week. It took many years for me to get a diagnosis and they kept bouncing me from provider to provider, specialty to specialty. It was almost like no one was hearing me or listening. It felt like I was just being pushed away. I felt like I was a problem. The first time that I was referred to a hepatologist, that individual didn't even take more than 5 minutes with me. They called the translator on me because they saw my last name and immediately told me that it was because I was overweight. I was dumbfounded. I felt like once again I was invisible. I finally ended up starting with an entire new medical team. I had gone in and prepared myself to be dismissed once again. But that wasn't my experience at all. I remember meeting Cecilia the first time she came into my office. She did come with a list of questions. And prior tests that had been performed, of course we carefully reviewed those. But what I noticed was there were some elements of her evaluation that we're still missing. From there, you know, we took a deep dive into her case and I immediately was very curious about her. She had known she had an elevated alkaline phosphatase for over a decade, and she had seen many physicians and hadn't yet received a diagnosis. He spent an hour and a half with me and just listened to my entire frustration and everything that I had gone through and told me that he knew what I had for the first time. I finally felt seen, I finally felt heard and I finally felt like I was getting validation and getting somewhere. We really wanted to help Cecilia get to the point where she understood why her blood tests are abnormal. We were able to come to a diagnosis with her and also a treatment, and I think that really changed Cecilia's outlook on her health and I saw it in our visits. She was more relaxed. There are times where I want to do everything, I want to volunteer, I want to be the mom that can be accessible to them 24/7, but I've had to learn to say no. I've had to learn self-care. And I think it's frustrating for them. But I think as they get older, they'll understand. Now that I'm further along in my journey, I feel like I am much more comfortable with my diagnosis. It is absolutely a relief because I feel like I'm not to blame. I accepted that this is something that I have to learn to live with and manage, but I don't want it to stop me from living a full life.

Abdul Salaam II

Executive Neuroscience Sales Specialist

7mo

Any opportunities in Illinois ?

Andrew (Andy) Patrick

Happily Married/Lifelong Learner/No Crypto/Retired

6mo

😎

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