Mahsa: My name is Mahsa. I am a wife, I am a daughter. I am a granddaughter. I love my family. Love my pets. Since I was born, I started having presentations in my neck and face glands. I was showing signs of parotitis, inflamed glands, ear pain and infections, and no one could figure out what was going on.
It was just another thing that, you know, they say kids get sick and it was just put on their allergies and the symptoms kept spreading. I had bruises all over my arm, down my back, on my legs. At the age of 16, I missed a lot of school. It was about six months of my high school that I missed, and from there went on, we kept going, you know, like my gallbladder was next on the list, which it got affected.
But for six years I was in and out of hospitals and from there more symptoms kept happening with no diagnosis. You know, nobody reached out to me for the pathology of my gallbladder to let me know if they found anything or not. From there, I was still in and out of hospitals as my face glands and neck glands were being affected.
I woke up one day a couple of years ago and my eyes were just puffed shut and I couldn't see anything. The doctors do their tests and at the end of the day they don't find anything. They would always just get some antibiotics and a round of steroids and, you know, a couple of years later, come back full blown. Doctors just couldn’t figure it out.
You think you're going to go to school, you're going to graduate, get a job, get married, settle down, have a family right. All of those things fell apart.
I asked a few doctors to, you know, biopsy anything and everything that was inflaming, and I started doing research from there. And I spent hours online. But even with all the hours that I spent, it took me one week to figure out what I have. One week it took me so. And now I have to go forward and prove why I have what I think I have. Thankfully, I found the right specialists who were willing to biopsy different parts of my body.
So, for three months I went forward biopsy everything. And they took all that information. And after 30 years being misdiagnosed as allergies, they said, “well, you have IgG4-related disease.” And I said, “I know.”
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 existing or new organs.
Mahsa: Getting a diagnosis is very validating in our daily struggles. The feeling of validation is very important for us patients. I feel we don't get it from a lot of people, especially if it's an illness that invisible, that feeling of validation. It's everything. It's everything.
This process taught me how to listen to my body. It's made me strong enough to want to advocate for myself and advocate for other patients, you know, to kind of help bridge these gaps that are missing and connect the right doctors to the right patients.
When a disease takes over your body, it becomes a part of you. So, I will always be a patient, but at the end of the day, I'm still human.
One day at a time. One day at a time.
Precleared.ca