Hello, my name is Brandy Starks, and I’m a clinical research manager in Science 37’s clinical operations unit, helping to build the company’s infrastructure for running clinical trials. I also manage a team of exceptional clinical research coordinators – specialists who work with participants and physicians on the trails. I think the most important aspect of my job is making sure the clinical research coordinators feel engaged and fulfilled. In my mind, I work for them – if they’re feeling engaged, then I know research participants will have a great experience during the trial.
Recently, Science 37 has been gearing up for research in a new therapeutic area: diabetes mellitus. We’ve received a series of trainings in this space, and in many ways, it made me reflect on how this disease has wreaked havoc in the lives of the people I hold dear to my heart.
My family, and many others like them, are skeptical of the medical community. Many times, they’ve seen family and friends go into a hospital and not come out alive. My personal belief is that due to lack of insurance and preventive care, many individuals often seek care at a point where their conditions have progressed beyond any hope of medical intervention. However, their concerns aren’t completely unfounded; the King/Drew Hospital in South Los Angeles had the nickname “Killer King” due to several missteps and errors in patient care that led to deaths of poor black Americans.
But not going to the doctor means not getting care for conditions that need attention, such as diabetes. As a young kid growing up in a Cajun/Creole family in Lafayette, Louisiana, I thought it would be inevitable that I would get diabetes. Let me tell you why.
All in the Family: My Mother’s Side
My maternal great-grandmother had diabetes, and both of her legs were amputated as a result. She passed away before I was born. Her son, my grandfather, also had diabetes. He died at the age of 45 due to complications from the disease. At the time, my mom was about 13 years old and was in high school, and my aunt was in nursing school. My aunt was the one who found him. She said my grandfather’s blood sugar level was so high that it was too late – he had urinated on himself, and his urine had the consistency of syrup, which is a symptom of diabetic ketoacidosis.
This was devastating for my family, because my grandfather was the breadwinner who supported my grandmother and their seven kids. One good thing did come out of it: My grandmother ended up going to college and becoming a teacher. I remember, though, there were times on the weekends when may grandmother would play old music, and sit there and cry. I wouldn’t bother her – I didn’t understand. But when I got older, I sat down with her and asked, “Why are you crying?” She said, “I just miss my husband.” That was very sad, and it happened for many, many years. Several of their children now have diabetes as well. I received news earlier this month that my uncle will have three toes removed tomorrow. It’s really tough news to process because in my experience, it’s always the beginning of the end. Hopefully the outcome is different this time.
All in the Family: My Father’s Side
The inevitability of diabetes probably seemed so normal to me because it wasn’t just something I saw on my mother’s side of the family. On my father’s side, my grandfather had diabetes. At first, half of his leg was amputated, then eventually he lost both his legs to amputation, and died shortly thereafter due to complications from diabetes. His sister had her legs amputated as well, and she too died from diabetes complications. His wife, my grandmother, also had diabetes, and suffered a stroke that we believe was a result of diabetes complications. Like my other grandmother, she had a difficult time coping without her husband. She would tell me, when I visited her, “I’m ready to die. I don’t want to be here anymore.” I would say, “Don’t say that. We love you, and we would miss you. Don’t say things like that.” “I just want to be with my husband,” she said. Two of their children have diabetes as well.
Having diabetes surround you can seem normal, but also a little overwhelming. It just keeps piling up and makes me think about myself, and my future. My mom is always on me, telling me, “Make sure you’re checking your sugar. Watch your diet, you’re overweight you need to lose weight.” She doesn’t say these things in a condescending way. She’s really worried about my health, and she tells me, “You know you had three grandparents who had diabetes, so you really have to watch yourself.”
A Change of Perspective
When Science 37 invited Robert, a person with diabetes, to talk to us about his experience as a person with diabetes, everything took on a different meaning for me. Up until that point, I just thought having diabetes was normal. It isn’t. Robert detailed how when he was diagnosed as a child, his father gave him a watch with marks on it to help him know exactly when he was supposed to eat. He also discussed having to learn how to calculate his dose. Even as a child, he didn’t have the luxury of skipping a meal as we often do. His life was very regimented. This was in stark contrast to everything I had experienced with diabetes. My family ate whenever and whatever they wanted. I had no idea there was a protocol that needed to be followed. All I’d hear was, “Oh, I’m getting the shakes. Let me eat a piece of candy.”
The holiday season is here, and when I get together with my family, diabetes is never discussed. Nothing has changed for us – we all eat very badly, at least when I go home to Lafayette. We eat lots of meats, rice, and sweets, and overall, just a lot of very rich foods, because that’s part of our culture, and I don’t think we’re at a point where we’re willing to let that go for health reasons. My dad, for instance, won’t even go to the doctor. I asked him, “Dad, are you a diabetic?” He said he didn’t know.
On my dad’s side, you’re called “healthy” if you’re overweight. If you’re skinny, you have to eat. Like in many other cultures, we use food to express love, and we have not modified our diets. At all, I wish we talked about diabetes more in our family, but we don’t – even though I have nurses in my family. We see it as a normal thing. “Oh, such and such has diabetes now. Okay, whatever.” That’s it.
I think about all the people that I’ve loved – and lost – because of diabetes. I already love my family to pieces, but knowing this, it just makes me want to hold them a little bit closer, and make sure we’re spending that quality time with each other.
A Change of Focus
I see the kind of maintenance that’s involved, once you’re diagnosed with diabetes, and everything that goes into monitoring your blood sugar, diet, and lifestyle. I don’t want that for myself. I’m actually grateful to be away from my home state, because now I’m in California where health is more of a focus, and I have a lot of people around me who are good role models. I think I can avoid the fate of some of my family. I’ve experienced way too much death already. I’m 35, and I can’t just brush diabetes off anymore saying, oh, it’s going to be when I’m older. I have to take it seriously because this is literally life or death, and I know it, because I’ve seen it.
As Science 37 continues the discussion about diabetes and highlights how it disproportionately affects minority communities, I realize that I want to be very invested in whatever recruitment efforts we develop. I see this an an opportunity that’s been placed in my lap. Science 37 is making a huge commitment and investment in diabetes research and education, so if I have to go to someone’s church, a health fair, or conference, I want to be on the front lines because that’s how important it is to me. As I said, I’ve loved and lost many people to diabetes – I would never want other people to have to go through that pain if it’s avoidable.
This story has been edited for length and clarity.
Last modified on September 28th, 2022 at 2:11 pm