Rare Disease Month has become super important to me since I was diagnosed with primary biliary cholangitis. But I never really paid much attention to it until I started down my own path with autoimmune disease.
Provider education is imperative
I have worked in healthcare for the last ten years. When I was originally diagnosed with PBC, I was primarily working in an intensive care setting. I remember talking to nurses, fellow respiratory therapists, nurse practitioners, physician assistants and a few physicians and updating them on my diagnosis. Not one person I spoke to knew what PBC was, or had even heard of it. Though I didn’t talk to any gastroenterologists or hepatologists, it was still quite shocking to me given the healthcare setting we worked in.
When I started telling my family and friends that I was diagnosed with PBC, none of them had heard of it either. I had never heard of PBC until I first saw my biopsy results populate on my patient portal. I felt it was up to me to learn everything I could about what was going on with my body.
My PBC was caught very early before any damage was done. I’m lucky, but that’s not the case for a lot of patients with PBC. Because of the lack of awareness, a lot of patients do not receive a diagnosis until they reach more advanced liver disease. And by then, the damage has been done. I’ve seen so many people share their stories of being diagnosed with PBC when they are already in the liver cirrhosis stage. Many will need a transplant to continue living.
More and more young people are joining my support group after they are diagnosed. This is good, because that means people are being diagnosed early before severe damage has occurred. We are moving in the right direction, but there is still so much work to be done.
Studies have shown that Hispanic and Black women with PBC are not receiving the medical care they deserve. Their diagnoses are not being found in the early stages of PBC.
It is imperative to educate physicians and providers on PBC. Besides helping to provide early diagnosis, our care teams need to be updated on the most current developments and treatments regarding PBC. In the last year, so many new medication options have become available. We need to make sure we are being seen by providers who know PBC and how to appropriately treat it to ensure we are receiving the best care we can.
Empathy for an invisible illness
It’s such a strange thing telling people you are ill, especially with PBC. Because unless you are showing signs of liver failure like ascites or jaundice, typically we “don’t look sick.” For the most part, PBC is an invisible illness: we don’t show any physical signs that others can see to indicate we have any sort of autoimmune liver disease. This makes a barrier when trying to explain why we can’t do something.
For instance, when you look at me you can’t tell I’m experiencing brain fog and I feel like my head is floating in a cloud. If I am having a bad flare day, you can’t look at me and tell I am extremely fatigued even though I got a good night’s rest. You can’t look at a person and tell they have elevated liver enzymes unless they are in a more advanced stage. Because we don’t look sick, people think there is nothing wrong with us. So, it can be hard to receive empathy, which can feel really devastating and cause problems with friendships and relationships.
I am always open to explaining to people what PBC is and how it affects me. Doing so helps to validate my disease to other people and help them to better understand what is happening to my body.
The benefits of awareness
Rare Disease Month is so important to PBC. Spreading awareness on PBC and how it affects us can lead to so many things, especially research and clinical trials. Educating on PBC and our unmet needs can help show that more work needs to be done. We need more treatment to help with fatigue and brain fog as well as the dreaded itch. Showing people how PBC can negatively affect us can help drive further discussion and research to make the future better for PBC patients. I hope one day it can lead to a cure!
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