I’m a 53-year-old African American living in Pennsylvania and as cliché as this may sound, my story began somewhere in 2015.

I started experiencing episodes of shortness of breath, extreme fatigue, nausea, and body pain. These episodes became increasingly intense, and more frequent, affecting my everyday life. Until then, I never had any significant illnesses but suddenly found myself going to the emergency room several times a week only to be told it was anxiety attacks. Now I’m no expert on panic attacks by any means, but I could confidently tell you the doctors didn’t know what they were talking about. I went to see every kind of “-ologist” multiple times, including mixologist, zoologist you name it, but nothing was discovered. I was the healthiest sick person I’ve ever met.

Eventually, I started believing I was going drop dead somewhere, and that would be it. At that point all I could think about was my children, so I tried to increase my life insurance policy, hoping to leave them more financially stable. By the grace of GOD to my surprise, it was their doctors who discovered the abnormal protein in my blood and urine which was mind-boggling since every doctor I had seen drew blood work. I took that information to my primary physician and after two years of suffering and several more specific tests, I was finally diagnosed with multiple myeloma stage 1 on December 26, 2017. That visit was like listening to Charlie Brown’s teacher talk; all I heard was wah, wah-wah, wah, wah the whole time. Anyway, I began treatment almost immediately, which led to also receiving a stem cell transplant on June 21, 2018.

Through GRACE, I’m still here…fighting for all myeloma patients but especially the ones that look just like me!!

Over the next 6 years, I’ve dedicated my every fiber to patient advocacy and being a solution to the disparity in the myeloma space amongst black and brown communities. My care partner and I started a support group in our area when we realized the need. We couldn’t have done it without the guidance of the IMF. Our support group is called the Mason-Dixon Line Myeloma Misfits, and our area of focus is myeloma living with us and not the other way around. We are so much more than this disease!

Partnering with the IMF has been a blast, and attending ASH23 is an exciting chance for us to network at this event and share those moments with you.

Follow Oya on Twitter: @grandgrizzo
Support Group Website: Mason-Dixon Line Myeloma Misfits Support Group