Tell us a little about your background:
I’m married, have a 12-year-old daughter, a bonus daughter, and two grandchildren. I love using social media to connect the diabetes community and exchange support with my peers. My favorite social media platform is Twitter. Diabetes decided to invade my body with latent autoimmune diabetes in adults (LADA) when I was 23.
What led you to advocacy?
Initially, I started advocating because there was not a lot of information about my specific type of diabetes. I would tell people I was diagnosed with LADA and they did not have a clue. I was often told LADA did not exist. After I started the Diabetes Social Media Advocacy (#DSMA) Twitter chat, I set my blog aside and began focusing on social media advocacy and psychosocial support.
I believe that advocacy is bigger than one person. Advocacy is showing up to speak to a local congressman or woman, it’s educating the public or volunteering to help local organizations or communities share important information with the people they serve. It’s making sure the voiceless have a voice, and it’s fighting stigma.
What do you do as an advocate? How do you do advocacy?
I started #DSMA to bring the community together for a weekly chat on Twitter about all things diabetes — support, awareness, education, and more. It was important to me to show the power of peer support through social media. As our tagline says: “Simple questions, thought-provoking responses — strengthening the diabetes community one tweet at a time.” We are still going strong! We meet every Wednesday on Twitter at 9 p.m. EST.
And, I recently started Women Of Color Diabetes on Instagram to encourage women from diverse communities to share images of their experiences with diabetes. As I told the Just A Little Suga diabetes blog earlier this year, I believe that people of color who have diabetes should make room for themselves in diabetes-focused discussions and spaces. I long for the day when I’m not the only black person in the room, and I encourage people with diabetes in communities of color to get jobs within the industry, emphasizing that there is place for our insight. That’s why I’m here.
What is one thing you are most proud of as a result of your advocacy?
The one thing I’m extremely proud of is using social media to connect people affected by diabetes with their peers. Over the past 10 years, I have met some extraordinary people from around the world, and as far away as Australia, who continue to push the envelope when it comes to living with diabetes, advocacy, and initiatives.
What does patient-centricity mean to you?
Patient-centricity has been a buzzword for a few years, but to me it means giving patients a seat at the table and having an active involvement in all decisions related to their health and well-being. Being fully included in all aspects of their healthcare, from primary care to participating in scientific discovery from clinical trials and studies.
What does science mean to you?
Science is life. It fuels my hope for cures for all noncommunicable and communicable diseases.
What’s your favorite scientific discovery and why?
Without the discovery of insulin, people who are insulin-dependent would not be alive today.
What’s the connection from science to medicine for you?
Clinical research means better treatments, technology, and tools to help people with diabetes and other conditions and diseases.
What is the most important issue to you regarding the future of scientific research?
Provide awareness and education for clinical research to people of color. I would make clinical trials accessible to people who live in low-income areas because it could potentially decrease out of pocket cost for medical supplies, including insulin, oral medications, and insulin pumps.
How would you feel about being able to join a clinical trial and participate in research from home?
Reading The Immortal Life of Henrietta Lacks and learning how black people were treated during clinical trials made me not want to participate in trials or research studies.
A few years ago, I attended a conference focused on clinical trials and learned why it was important to have minorities participate in clinical trials. If I could join from home, I would sign up in a heartbeat. To me, it is crucial to advance science and to help when and where I can.
Anything else you’d like to tell us?
I asked my husband what he would want to know if he did not know anything about me. He asked me what drove me to want to advocate for people and have such a passion for it.
My drive and passion come from people with diabetes. They have to fight for their life, access to care, medication, and tools needed to manage diabetes every single day.
This story has been edited for length and clarity.