Carsten Sørensen, who lives in Denmark, Europe, was diagnosed with IgG4-related disease in 2021 at age 47. He shares his long path to diagnosis, the importance of self-advocacy, and how finally finding the right doctor made all the difference.
Transcript
It was such a relief to finally find a doctor who knew what I had and how it could be treated or made stable. I see myself, and with this disease, like, okay, now it’s active, but it’s in stasis, or something like that.
And that’s the way they treat this disease. In my case, anyway, it cannot be exterminated or removed. It’s just like a chronic part of my life. But we were on the same level.
I think the way I managed to find this doctor, in the end, was lots of questions. I actually think that some of the doctors along the way believed I was quite annoying and had been a problem because I continued to ask questions or was not satisfied with the way that they managed this stuff.
Later on, I experienced that if they had done something differently, my situation would have been better.
The funny part, in some way, was that when I looked in my patient journal on the internet, I learned that I had this mass in my solar plexus, and it was blocking my kidney, preventing the urine from flowing. That was the problem that gave me the pain.
I called the emergency doctor and asked, “Should we put something down there to remove the blockage or something to save my kidney?” And he said, “That’s a good question.” But then he told me to bring it up at my next appointment. When I did, they said, “No, no, that’s not important because you may have cancer.”
Three months later, I found this doctor who knew more about IgG4. They had discussed my situation at a conference and told me, “We had agreed that maybe we should give your right kidney a chance and put in a catheter.”
I was a bit surprised because that was sort of the same question I had asked three months earlier. But yeah, it was unfortunately too late. So yeah.
