Mahsa Pazokifard, who lives in Orange County, California, was diagnosed with IgG4-related disease in 2022. She shares what it’s really like to seek a diagnosis for IgG4-RD and what she wishes doctors understood better about the patient experience.
Transcript
We are stuck in a state where our body is not just failing us, but it’s acting in ways that it never has before. It’s also new to us patients a lot of the time — especially the severity of that.
When we come in to do a consult and get your opinion on what’s happening, trust us that we don’t want to be there already. It’s stressful enough just trying to schedule the appointment, to come in front of you, and then to try to explain what is happening to our body.
What we want you to do is please listen to us in that moment. Because we are very stressed, and if our voice goes up, it’s not because we’re fighting against you.
It’s because we’ve been frustrated going through the system and trying to find the help that we really need — and we’re just not getting it. In fact, the stress of all of that is making our condition a lot worse. And if anything, it actually does make your condition progress.
So when we’re now in a progressive state, we just really need you to care for us, to listen to us. One thing that we rare patients need is creative minds.
We need our doctors, our medical staff, and our care teams to be curious and to also be creative enough to want to explore new routes — whether it’s a treatment, a new procedure, or even something like an exploratory biopsy. Anything, right. We need that kind of creative thinking, to be happening and it just doesn’t seem to be there at this point.
We are one of your thousands of patients per day that come in for five minutes. We have five minutes with you. So please just listen to us, take us seriously. We don’t want to be sick — but we are.