How has your condition impacted you? I’ve been lucky in that the symptoms have been minimal and I’ve responded well to medication. Since the outlook for both conditions is not all that great as they progress, I’ve become much more conscious of my health and daily decisions that might affect it in hopes that I might be able to slow, manage or stop progression.
What would you want people to know about your condition? Good question. I’ve never thought about that. I guess for starters, just that it exists. It’s pretty rare, so no one’s ever heard of it. And that stem cell research can play an important role in treating/curing it. So, you know, I’d love it if people would support more stem cell research.
What would you want to tell someone who is newly diagnosed with your condition? That most things sound scarier than they are, and this is no exception. That medicines—even a ridiculous amount of daily pills—can be tolerable. That you should make sure you like your doctor(s). That just because your friends and family will never have heard of PSC, doesn’t mean that they don’t care. That it’s manageable. That laughter always helps (yours or someone else’s). That once the news sinks in and you readjust, there will be days (weeks even) where you don’t think about it even once.
Thanks so much for sharing your thoughts Carrie!