“That isn’t caused by your hep C”

Have you heard this before?

I know I have, and lots of people I have spoken to hear the same thing and some a lot more than once. Whether from a nurse or their doctor it is a common reply to questions about moods, pain or other issues that are seldom considered by healthcare providers as caused by the hep c virus.

The medical expression is extra-hepatic manifestations, as in not directly about the liver. You may have read about it before, as I choose everyday language as a rule.

I am not suggesting that every pain or every ailment is caused by living with the hep c virus, but there is some evidence now that links all manner of conditions to living with hep c and when we are undiagnosed and living with hep c over decades it can be even more pronounced.

The list is growing and has gained acceptance with the people who study these things, but there has been less than robust interest or more importantly, funding to pay for the research, and it does require funding to support the necessary work involved.

This all points to a conclusion in my view, and that is that many physicians and other healthcare providers need to know more about how hep c affects people outside of the obvious liver connection.

It is clear to many of us who work in the area of education and awareness that there is an unmet need in reaching the treaters.

This is even more critical with point of care primary care physicians.

As I have said before, I am not a doctor and I am not a healthcare professional. I don’t doll out medical advice or drive agendas but I do advocate for better care for the community affected, and the word from community indicates there is a great need to see that the people we rely on for answers are better informed.

This may sound bold to some, but I make no apologies when it comes to the issues that impact people’s lives in the most profound and real-life ways.

What can we do to change the narrative when it comes to these things is a big question. In terms of the why, we know the answer easily, but the how presents some challenges. As individuals we can support the call for better care, and we can plant seeds in the minds of those who provide our care by mentioning studies or just starting a dialogue with our primary care doctors.

This is something I try to do on a regular basis when I see my PCP, and over the years we have discovered much together.

Not all PCPs are as open and I am not so naïve to believe this approach works with all, but who knows.

In the bigger picture it is a necessity to see more widespread education of healthcare professionals in the area of HCV because it is not at all so rare as once believed with 170 million or more affected globally.

This is one area where we need the support of community if we are going to change the wrongly held beliefs, and you can do it in a private and confidential way and nobody but your doctor needs to know, and they are sworn to protect your confidentiality, just like those of us who work in peer support.

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