Exploring Different Rare Disease Perspectives – Mental Health Awareness Month 

A man in a blue button up shirt smiles in front of a maroon background.

Being diagnosed with a rare disease is challenging, to say the least. Being diagnosed with a rare disease as a Person of Color can create additional concerns. Damon Brooks, a Director of Healthcare Operations who lives with IgG4-RD, shares his story of diagnosis, his experience within the healthcare system, and the importance of being your own advocate.  

Journey to Diagnosis  

In May of 2022, I noticed some swelling in my legs. I was taking off my socks and saw an indentation that was a little deeper than normal. I checked again the next day, and it looked like two of my left toes were swollen. I scheduled a physical with my provider, who ran some labs and said she’d contact me the following week.  

The next Tuesday, I got a phone call from my physician's office saying I needed to go to the emergency room right away. I went, and they ran additional blood work, and the internist came back and said, “I can keep you, or I can let you go, but you have to promise that you follow up with this care team," to which I thought, “care team for what?” 

After learning that my liver and kidney functions were all over the place, the doctor requested that I get a CT scan. I'll never forget the look on his face when he said, “Mr. Brooks, you're not going anywhere.” He told me I had two tumors on my left kidney, one tumor on my right kidney, a mass on my liver, multiple masses on my stomach, and an inflamed pancreas.  

With these results, he walked through the various outcomes, including cancer. He also told me I needed to have hope, which I did, as I rely heavily on my faith. After several biopsies and tests, which were all negative for cancer, along with two hospitalizations, each seven days or more, I was diagnosed with IgG4-RD after five months of uncertainty." 

Advocating for Care 

I have good health insurance, and I utilize it. I don't mess around when it comes to my health, but I do keep the thought in the back of my mind.  I ask appropriate questions to my providers to make sure I’m receiving proper care, because I do know the history of minorities in healthcare here in the United States. A lot of times we're looked over or blown off, or our symptoms and concerns are not taken seriously. But I have not had that issue.   

My biggest piece of advice is to advocate for yourself. Advocate. Advocate. Advocate.   

I am no stranger to autoimmune diseases. My mother passed away from complications due to Multiple Sclerosis and my auntie passed away from complications due to Lupus. Their journeys and challenges have also inspired me and are the reason why I continue to advocate. 

I still ask questions like, “Is this appropriate? Why are we doing this?” My nephrologist put me on a diabetes medication, and I was like, “Why? I don’t have diabetes. What is it going to do? What are the side effects? How long do I have to stay on this for?” Go to your doctor, and then if you're not getting good results with that one physician, go to someone else.  

Finally, get a strong support system. I'm very blessed to have friends and family who care for me and are there if I need anything. 

Whether a physician, caregiver, or someone living with IgG4-RD, we invite you to join our IgG4ward! Online Community, and learn more from others within the IgG4-RD community.

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Responses

  1. Damon, I’m so glad that our paths crossed and we get to support one another through this journey. I will continue to hope for healthcare equality for all!