Type 1 Diabetes Diagnosis
In 2007, Nia Grant was a senior at Spelman College, anxiously awaiting spring break so she could go on a trip to visit family in Florida. In the weeks leading up to the trip, Nia found herself struggling to sleep through the night and making frequent bathroom trips, which she attributed to the stress of midterms season as a college student.
On the 6-hour drive to Orlando, Nia’s symptoms only increased. “The longer we were in Florida, the worse I felt. We visited Disney, and I had to go to the bathroom constantly,” Nia recalls. It was in the middle of the night when Nia became nauseous and sick, and she and her family began to worry. The next morning, Nia’s sister drove her to the Emergency Room to be checked. “The nurse handed me a clipboard with intake forms to fill out and it was then that I realized I couldn’t see well enough to read the page,” Nia notes.
Assuming she had perhaps contracted food poisoning or another virus, Nia was tested and awaited results with her sister and friends. Eventually, Nia’s doctor visited her room and asked, “How long have you been diabetic?”
“That’s how I found out I had Type 1 Diabetes,” Nia explains. “I was so shocked. I called my mom on the phone and had the doctor tell her my diagnosis because I knew she wouldn’t believe me. She flew down to Orlando the next day.”
Nia remained in the ICU for a week recovering. There, she learned how to use insulin by first practicing on an orange before trying her own body. When she was released, she flew back to Atlanta to finish her senior year and began the journey of living with diabetes.
Finding Treatment
While the standard treatment for Type 1 Diabetes (T1D) is insulin, this is only one aspect of how Nia manages her condition. Food, exercise, and lifestyle choices are also important components that people living with Type 1 Diabetes must consider. “I’m lucky that I have such a strong support system and people in my life who have educated themselves about diabetes or who have it themselves. When I say, ‘I’m low’, I don’t have to explain to my friends what that means, which is nice,” Nia reflects. As with many chronic conditions, there are no days off from T1D and individuals living with the disease must be vigilant and make important choices to maintain their health. “I think it’s critical to remember the people behind the disease,” Nia advises. When Nia was first diagnosed, she sought out resources and support online, looking to existing diabetes advocacy and support groups. There, she made close friends and found a community that understood her condition and offered support and advice.
Getting Involved in Clinical Trials
Nia has been in several clinical trials, the first for an insulin pump four years ago. “I love clinical trials,” Nia gushed. “They are an opportunity for the average person to be involved in complex medicine.” Nia is a proponent of participating in clinical trials because of the need for diverse representation in these studies.
“A lot of times in clinical trials, you don’t see people who look like me. There’s a well-documented history of mistreatment of African American people in medicine. I am female, brown, and queer. My participation in trials helps to make the process more transparent and creates more representation for my community,” Nia explains.
Nia shares the important reminder that the more diversity in a trial, the better data can be collected and the better chance for treatments to be developed that are effective for all communities.
Although there are many important reasons Nia recommends participating in a clinical trial, she also acknowledges some of the barriers that can make participating difficult. “I live in Baltimore with a lot of great research institutions but was assigned to a hospital site in Virginia, 3 hours away from me. If a trial requires you to have visits in-person, that can take an entire day of driving and requires transportation, time off work, and in some cases childcare,” Nia notes. Another barrier for African Americans and other members of minority communities is the lingering fear and mistrust that still exists from past medical mistreatments. Nia admits that this fear still lingered in the back of her mind, but she pushed herself to take the step to participate and is glad she did. “It’s important to know that if you’re thinking about joining a trial, you have the right to ask as many questions as you’d like, in fact it’s encouraged. Clinical trial care teams want you to understand the process and make an informed decision,” Nia explains.
For anyone considering participating in a clinical trial, Nia advises, “Do it! I know that participating can sound scary or overwhelming, but this is your chance to contribute to science. The more data researchers have, the better data it is for the development of treatments and cures for you and members of your community. How cool is that?”
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Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
