I think for myself I sometimes even forget I have what is considered a 'rare' disease. Since I have been dealing with this in some way of another since 1985, it has become less of having a 'rare' disease than it has having a chronic one.
If you look at some of the 6000+ diseases that are considered 'rare', it can give us just a slight glimpse into how many people's lives are affected every single day by a disease that most of us have never heard of.
To them though, as it is to us, it is a disease that remains part of their fabric. All too often there is no cure - and unfortunately all too often no treatment. We have to acknowledge how truly fortunate we are that we do now have several lines of treatments available to us. With Seladelpar now on the market we have been given another way to help control this slow, but progressive, disease.
On this Rare Disease Day I hope you take time to just remember so many who are dealing with a disease little is even known about. We are so very fortunate to have the support and education that comes from The PBC Foundation. I consider Robert a close friend who champions for all of us every day. Professionals like Dr David Jones who have devoted their lives to learning and imparting his expertise to all of us, continue to strive for better care for all of us.
I'm just glad we are all in this 'rare' disease together. We support and encourage . We continue to learn and be informed.
Thank you for letting me be a part of this journey with you.
Rare???? What are these chances?
Changes and advances in pbc diagnosis -praise be. Hallelujah!!
Which tests do your providers recommend annually?
