In 2018, Melodie Narain-Blackwell was 36 years old when she was diagnosed with Crohn’s disease. She suffered with the debilitating symptoms for years before finally receiving a diagnosis, which apparently took longer because she is a woman of color, she explains in an I am BIO Podcast.
“The disparity in the space of Crohn’s and ulcerative colitis for people of color is that they’re not diagnosed. And usually, when they’re diagnosed at these moderate, severe states, they’re not even offered a drug that could actually help them have a better quality of life,” says Narain-Blackwell.
Narain-Blackwell says she had to endure months at a time of nonstop rectal bleeding, rectal tearing, burning, recurring rectal abscesses, hair loss, fatigue, arthritis, and more.
When she went to the hospital, a colorectal surgeon assured her that nothing was wrong. But a few weeks later, she was admitted with a temperature of 104.3 degrees F and a burst abscess in her rectum. The following day, she had surgery, and it was at that point that she was diagnosed with the disease.
Seeing inequalities
Narain-Blackwell says she saw inadequacies and inequalities in a health system that had left her undiagnosed for so long. She shared her experiences and received hundreds of responses and petitions for help. When she realized how many others had a similar experience, Narain-Blackwell founded Color of Crohn’s & Chronic Illness (COCCI), a nonprofit organization dedicated to health equity and BIPOC communities with digestive diseases and chronic illnesses. Currently, the community has over 500 members.
Today, her personal mission is to support the development of tools and opportunities to prevent others from having to endure what she did in the past and keep an engaged and committed community.
The patient’s voice matters
“When I knew that my voice really mattered in this disease because there wasn’t enough there, I felt ready. And I did what I knew I could do, and I created something that I knew would be unstoppable.” Narain-Blackwell explains in the podcast.
“When you see that these community members are suffering and no one is taking the opportunity to hear what they’re saying, you don’t have any other way to go but forward. I could turn a blind eye to this,” she says.
For Narain-Blackwell, the inequity here starts at the beginning. “That’s where the gap is. We need to be factored into the disease so we can get the diagnosis,” Narain-Blackwell points out.
She says more and more companies and organizations are also becoming supportive of COCCI’s goals to raise awareness and help encourage BIPOC community members to speak up for their rights.
“Access starts with awareness. Education and always leads us to better opportunities, and that’s where we need to be so we can know that these drugs that are there can impact our lives for the better.” Narain-Blackwell concludes.
