Damon: I'm originally from Detroit, Michigan. My parents were both in the military, so I kind of started my first five years of life as a military brat. My mother had multiple sclerosis, so, by the time I was seven, she started having symptoms. And so just kind of a slow deterioration. Until the time I got 20, she passed away from symptoms to multiple sclerosis.
So, I was pretty much raised in Detroit up until I left back in 2008 to come to Atlanta. So 2022, and I came home one day and was taking my shoes and socks off and I noticed indentation in my leg. So the next day I looked down on my feet again and a couple of my toes were swollen I thought maybe, let's see, my primary care physician. Her colleague called me and said, “You need to go to an emergency room.”
They ran bloodwork and the internist came and said, “there's something going on with your kidneys and your liver. I need you to have a CT scan.” And then he came back and I saw his face. Something wasn't right. He was like, “So I get results from your scan, You have masses throughout your abdomen area and we need to rule out a metastatic cancer. You have a lesion on your liver. You have two lesions on your right kidney, one of your left kidney. You have multiple lesions in your stomach area and your pancreas is inflamed.” And they said, “we're going to biopsy your kidneys. We're going to hold off on doing your liver because we want to do your kidneys first.”
But by the July, by the end, this time, he still didn't know what it was. And I start getting really sick again. And I had to go to a hospital and they went in and they did a biopsy on my kidneys. And then they also did a biopsy in my stomach. And that's when I found out it was 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.
Damon: I said, it was impacting my quality of life, just annoying. I would say, because I'm being I used to be an active in doing stuff, but like, I can't you know, I want to go to my office. I want to go to church on Sunday. You know, I want to go travel. And I had planned these trips like, I'm going overseas, you know, now I can’t do the things I want to do.
I will get winded, constantly fatigued. Like just going to brush my teeth in the morning, lean on a sink, be a stand in a shower, leaning against a wall. It's scary not knowing and there's not a lot of research on IgG4 so you Google, you see like the same articles
My nephrologist, she was sharing information with me as long as she found out about it, but don't know can be scary.
Once I realized what the disease was and how it could impact your organs. I go have bloodwork every month, but then they kind of tapered it off every three months. So, between those three months, I was worried like, my goodness, could this be attacking my organs? And when I go back and I'm like, we need to get you in hospital because now is attacking not only your pancreas but your gall bladder. And it moved up to your lungs because I didn't have any symptoms. So, it is like a silent type of monster inside of you. And by the time you find out, it could be too late. And that's what scares me the most.
It presents us a lot of other different diseases. And that's why I physicians are not aware of it. So, it's very important that you follow up with your health care providers to make sure you get tested frequently and do the blood work so you can see what these is doing inside of your body.
I would say, make sure you surround yourself with positive people And I would say, be honest with what you're going through and make sure you translate that and make sure you're honest with your providers about what you're going through and hold them accountable. And just don't give up. Don't give up.
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