Diagnosis

Sabrina: My name is Sabrina. I am a resident of Atlanta, Georgia. I'll be 54 in just a couple of days. And I'm a mother of six. I work in health care. I've been in health care for 31 years.

In 2011, I started to notice that I was feeling a bit underwater in my right ear. I just couldn't hear things. Well, the sound was muffled, and I couldn't really explain why. And so that was a tad bit concerning to me.

The ENT said we're going to do a CAT scan. And during that CAT scan, they discovered a large mass growing in my right ear canal and in my mastoids.

We went to surgery. I was in the recovery room and he came in with sort of a gray look on his face and said, “Sabrina, this looks bad. And I'm just afraid it's cancer.” I was just really confused. After they sent the pathology off, it came back and it wasn't cancer.

When you're in that waiting period to get a diagnosis, I felt so much uncertainty about my life. What if they never find out what's going on with me and I die?

The results of the spinal tap, went back to the rheumatologist, and she says, “I think you have something called IgG4.

SLATE: Immunoglobulin G4-related disease, or IgG4-RD, is a chronic, systemic, inflammatory disease that can affect nearly any, and often multiple, organs of the body.

It is characterized by silent, ongoing organ damage and recurrent disease flares causing accelerated and irreversible damage to previously affected and new organs.

Sabrina: Sometimes there's some concern about who really should treat this disease? And I feel caught in the middle. That doesn't feel so good. I just really want treatment. I really don't care who treats it. I just really want treatment. Before we get to a point where I'm in the hospital again.

My manifestation of IgG4 happens to be in my brain. And so I had full neurological involvement in my brain And these intractable headaches that would almost bring on seizures and multiple hospitalizations and visits to the emergency room. That started my journey to seeing different physicians. That physician, while under his care I had five surgeries.

Those were tough surgeries to get through because all of them involved either my mastoid or my skull base. As long as they were doing surgeries to try to remove some of the invasive areas, everything was fine. But how many more surgeries can you safely have? When those surgeries stopped and there was no treatment to kind of push the disease back, that's when there was more brain involvement,

And also, during that time, I began to experience some facial neuralgia. And so there was this trigeminal neuralgia that would make my face feel like it was literally on fire.

A lot of things have passed, a lot of flares and I'd say that I'm more hopeful. When the when I began the journey, it was completely in the dark. If there is way of saying there's a silver lining to this disease, it is that there are periods of relapse. And when the disease is in a remission state, I’m going to change everything about my life to make the period of remission as long as possible.

So, I'm so hopeful for other treatments that will keep the disease from full manifestation. Everything matters with IgG4-RD and push. If your physician doesn't want to do something, push.

My case is no different than any other IgG4-RD patient. I long for the day when I can say I've been in remission for five, ten, 15 years and I know that it's coming.