Carsten Sørensen, who lives in Denmark, Europe, was diagnosed with IgG4-related disease in 2021 at age 47. He explains the frustration of delayed diagnosis, sharing how missed signs of IgG4-related disease led to devastating consequences.
Transcript
I did face problems because I could feel that something was wrong. I had this pain, and the antibiotics just didn’t solve the problem.
It kept coming back again and again. At one point, I even thought a doctor might think it was some sort of mental issue — that it was something I imagined or was worrying too much about. That was very frustrating, because my right kidney was in the process of dying. And that actually hurts.
It was really frustrating. If they had caught this development — the IgG4 fibrosis mass — maybe I would still have a kidney that worked today. Originally, they told me it was just acid reflux that caused the symptoms in my solar plexus. But later in the process of diagnosing it, a doctor told me, “Well, this might be a lymphoma or sarcoma.”
I remember my girlfriend sat beside me and asked the doctor, “Can he die of this?” And the doctor said, “Yes, you can die of this.” Then I had to go home and manage a lot of coordination and make appointments for bloodwork and other things on my own.
I was actually quite distressed. I was in over my head at the time — I had just been told I might die. It was quite serious.
