Mahsa Pazokifard, who lives in Orange County, California, was diagnosed with IgG4-related disease in 2022. She offers reassurance to newly diagnosed patients and shares advice on advocating for yourself when doctors dismiss your concerns.
Transcript
The first thing I would say to our patients who are struggling to get a diagnosis, and you do suspect that you have IgG4, is to first of all, not panic.
Because a lot of times what our patients do is they go to Google and they start looking up how IgG4 happens and what it does. And a lot of times there is misinformation available online. We always have to take that fear away from our patients.
There is no 20-year lifespan — let’s just get that out of the way right now. That is based on an old narrative of older males being the only participants in the study.
Don’t go on there looking, but be curious enough — and have your doctor be curious enough as well. Find some resources online. Grab a couple of articles or publications from the medical journals and take them to your doctor and say, “Hey, I believe I may have this,” and have them look into it.
If they’re not interested and they just want to keep telling you, “It’s a rare occurrence. It doesn’t happen,” that would be when I would say, please look into adding another specialist to your care team.
