By Megan Sayles, The Afro
Kyhla Desire was misdiagnosed twice before her family finally determined she had Type 1 diabetes at age five. Her doctor initially told her mother she just had the flu— a common mistake since many of the symptoms of Type 1 diabetes, such as fatigue, body aches, chills and vomiting, mimic those of the flu. But, Desire’s blood sugar was never checked.
It was a great aunt, who was a nurse and diabetic, that noticed Desire’s increased urination and excessive thirst, leading her to check Desire’s blood sugar. The family was shocked to find it registered high.
“My reaction wasn’t dramatic, partly because I was so young, but also because my parents handled it calmly. Diabetes wasn’t foreign to me— my dad was diabetic, as were my grandparents, whom I’m very close with,” said Desire. “My family’s familiarity with the condition made the transition much easier, and they rallied around me with incredible support.”
Desire’s story isn’t uncommon. Across the country, Black youth with diabetes are still facing delayed diagnoses, unequal treatment and limited access to new technologies that could improve their outcomes.
A study from the Journal of Clinical Endocrinology and Metabolism found that White patients were more than twice as likely to use insulin pumps than Black children, even after accounting for income and education. Black children also had higher average blood sugar levels and were more likely to experience serious complications, like diabetic ketoacidosis.
Desire’s experience echoes the barriers highlighted in the study. Despite her family’s support, she struggled to access resources that could have made managing her diabetes easier.
“I often felt like my medical team didn’t share the same goals as us — achieving a better A1C without making my life unbearably difficult seemed impossible,” said Desire.
It wasn’t until age 12, when her mother threatened to leave Boston Children’s Hospital, that Desire finally gained access to an insulin pump. Her mother, determined to advocate for her daughter, bought every book and read every blog on diabetes that she could find. She even learned how to manually calculate and administer insulin— acting as a “physical pump” to prove the therapy would work and satisfy insurance requirements.
“My mom is my superhero,” said Desire. “She doesn’t particularly enjoy reading, but in that moment when she decided a doctor wasn’t going to help her child, she took matters into her own hands.”
Addressing these disparities is at the heart of the African American Diabetes Association (AADA), a national nonprofit dedicated to educating Black communities about diabetes. The organization advocates for equitable access to care and technology, creates support networks and develops culturally-relevant educational programs.
Leon Rock, cofounder and CEO of AADA, said the COVID-19 pandemic put a spotlight on the disparities in diagnosis and care for youth with Type 1 diabetes, which he deemed devastating.
“While Type 1 diabetes is an autoimmune condition, its impact on Black youth is magnified by socioeconomic and systemic barriers, leading to significantly worse outcomes. Black youth with Type 1 diabetes are consistently presenting poorer glycemic control and are 2.4 times more likely to die from complications than their White peers,” said Rock. “These disparities stem from gaps in care: lack of access to life-saving advanced technologies, like insulin pumps and continuous glucose monitors, and the impact of low socioeconomic status on the ability to afford consistent nutritious food.”
Rock inspired Desire to become a founding youth board member of AADA. For him, it’s critical to give young people a seat at the table in conversations about type 1 diabetes. He believes meaningful change can only be realized through grassroots outreach, bringing education, support and resources directly into the communities where Black families live and youth grow up.
“We can’t wait for families to come to the clinic, we must meet them in the heart of the community,” said Rock. “That means showing up in barber shops and beauty salons; youth centers; Boys and Girls Clubs; rural communities, faith-based organizations; public and assisted housing complexes and public schools.”
