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Advocating for Yourself With PBC
Bel’s journey to getting a PBC diagnosis didn’t take a straight path. Her experience with an initial misdiagnosis gave her some valuable insights she hopes to impart to others living with the condition or trying to get a diagnosis.
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00:00:00:00 - 00:00:32:15
Bel Kambach
My symptoms started in the summer of 2009. I had a very active lifestyle. I’m a geographer and a lecturer on world cruises. I was the picture of health. I had traveled to 104 countries, carrying along beside me a toddler. It started with extreme fatigue and an irrational itch, an itch that started in my feet. I was not so concerned about tiredness.
00:00:32:15 - 00:00:56:19
Bel Kambach
I just thought I overworked, like many of us; however, the itch was unbearable. You can’t even sleep with it. So immediately I went for a dermatologist. Dermatologist says, “We need a blood test because it’s not your skin.” The blood test showed very high liver numbers. So they immediately said, “We have to send you to a hepatologist. We need to start you on steroids.”
00:00:56:21 - 00:01:30:11
Bel Kambach
My local hepatologist diagnosed me with autoimmune hepatitis that I doubted, so I went straight home. Just research and research. After reading everything, I knew deep inside of me that the symptoms and autoimmune hepatitis did really not match my way of life. So I said, “I really want a specialist,” and usually when you have misdiagnosis, it’s a team of 10 or 20 hepatologists that go over your case to kind of decide what you really have.
00:01:30:13 - 00:01:59:01
Bel Kambach
It was kind of like fresh air to get my real diagnosis, and I felt like I was put on a dose of prednisone just because of what I look like — “Ah, so this is a woman of color. She kind of fits the profile” — not taking into account what my lifestyle was or what I do for a living. I think — and I suggest this to every woman — be your own advocate.
00:01:59:06 - 00:02:21:08
Bel Kambach
Write down questions for your hepatologist. Go with the list. Go with a little pad, so that you ask them and you don’t forget. No. 1 is: So I do have PBC. OK, what stage am I in? How do I know what stage I am? What’s my treatment? Does my insurance cover these treatments? What can I do on my own?
00:02:21:10 - 00:02:34:07
Bel Kambach
No one knows your body like you do. My name is Bel Kambach, and I’m a member of myPBCteam.
Like many people with primary biliary cholangitis (PBC), Bel Kambach found the journey to getting a PBC diagnosis didn’t take a straight path. What started with severe itching on the bottoms of her feet turned into a visit to a dermatologist (skin specialist). That was followed by a visit to a hepatologist (liver specialist), starting a prescription medication, and a misdiagnosis of autoimmune hepatitis. It was another two years until Bel got an accurate diagnosis of PBC.
Diagnosing PBC may be a difficult and lengthy process. The main challenge is that PBC symptoms can be very general. For example, itching can be a symptom of several dermatologic issues, and fatigue is also a part of many chronic conditions.
Your healthcare provider may use several medical tests in the process of diagnosing PBC. These include blood tests that examine the status of your liver, check for substances that indicate autoimmune conditions, and evaluate your cholesterol levels. Your doctor may order imaging tests like an ultrasound, a fibroscan, or magnetic resonance cholangiopancreatography to assess your liver and bile ducts.
Bel felt relieved when she finally received her PBC diagnosis. Her experience with an initial misdiagnosis gave her some valuable insights. She hopes to impart them to others living with the condition or trying to get a diagnosis.
Bel stresses the importance of advocating for yourself during the process of getting your PBC diagnosed and treated. Being your own advocate means taking an active role in your care and being clear about your needs and goals during your PBC care journey. Here are some ways to advocate for yourself in a medical setting:
Bel recommends noting down your questions and concerns before every medical appointment. When discussing a new PBC diagnosis with your doctor, you may want to ask questions such as:
On myPBCteam, people share their experiences with primary biliary cholangitis, get advice, and find support from others who understand.
What was your PBC diagnosis journey like? Do you have any advice for others recently diagnosed with PBC? Let others know in the comments below.
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What type of PBC does Bel have, not clear from her video or transcript
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