For parents of a Type 1 diabetes patient, a diagnosis of the chronic autoimmune disease for their child can come as a shock.
Usher can identify. The award-winning singer, songwriter and actor recalls feeling “blindsided” upon first getting the news that his child had Type 1 diabetes, and says knowing about the possibility sooner probably would have helped him better ease his 6-year-old into the process of dealing with the condition.
“Even though I don’t live with diabetes, I do live with diabetes because there is not a waking moment in a day that I am not thinking about my child and making certain that they are OK, and that they are healthy, and that their choices and decisions are going to help them to have a very healthy life,” Usher told U.S. News in a recent interview.
The Grammy winner and recent Super Bowl halftime performer is drawing upon his parental experience to serve as a spokesman for the 1 Pledge Campaign. The initiative from pharmaceutical giant Sanofi seeks to raise awareness about the use of early antibody testing for Type 1 diabetes – in which a person’s pancreas doesn’t make insulin or makes very little insulin – and to make it a more routine part of primary care wellness.
According to findings from a new research survey commissioned by Sanofi and released Wednesday by Beyond Type 1, a nonprofit patient advocacy organization, only 14% of adult respondents with Type 1 diabetes said they took an autoantibody test prior to their diagnosis, and 68% of adults with the condition who did not take an autoantibody test said they regretted not doing so. More than 9 in 10 caregivers said they wish they’d learned of their loved one’s risk of developing Type 1 diabetes before the diagnosis.
“A lot of people are just unaware that there is the opportunity to get autoantibody screening for Type 1 diabetes,” says Kristian Hurley, a senior vice president for Beyond Type 1.
Usher recently sat down with U.S. News to share about his experience as a parent and his work as an advocate for early screening for Type 1 diabetes as a spokesman for the 1 Pledge Campaign.
Below is video of the full interview with Usher, along with several interview excerpts.
What inspired you to get involved in this effort?
Usher: Having a child that lives with Type 1 diabetes and being a parent who could have reaped the benefits had I been able to detect it earlier is part of what I want to engage the world in, in helping them understand that option is available for them.
(Another reason is) sharing my story, my perspective, my opinion and my consideration for those people who are about to embark on this journey, this experience that I couldn’t have been prepared for. Even if I had been given more than enough information, it still comes with a daily reset, a daily reacclimation of whatever the challenge is for that moment, especially dealing with an infant.
What were the first signs you noticed in your child that caused you concern?
Usher: My (child) was a bit lethargic, (they were) urinating a lot, there were incidents where (their) energy was extremely low. And those were all kind of telltale signs that I needed to go to a physician and at least try and figure out what was going on with my child, which I would then be made aware that at 6 years old, my child was T1D.
Had you had any previous experience of a family member having Type 1 diabetes?
Usher: No, there had not been any Type 1 diabetics in my family. There were Type 2 diabetics in my family – my grandmother and a host of other people of whom I kind of watched and experienced in different families. It was kind of almost like a thing that you would come to recognize and realize what eventually happened in Black families.
But having some experience in knowing that insulin was necessary to remedy high blood glucose levels … and the idea of drawing insulin for my grandmother when I would spend time with her at her home, and also to prick her finger, those were all things that began to help me to understand what it was to deal with it. But never with an infant – I never even knew that it was possible.
How difficult was it for you to decide to share your story?
Usher: I kind of live my life as an open book as an entertainer, but this was something that was very personal to my family, and it was a conscious choice of which I wanted to make certain that my child would not feel as though I was invading (their) privacy. But when (I) explained that sometimes a disorder can be of advantage to someone else and there’s a positive light at the end of this tunnel. If I were to just put it simple: I’m working on a plan to make Type 1 diabetes less of something that should … warrant shame.
Sometimes being able to know that there are other people who are going through what you’re going through – if I’m able to share that and without shame, then hopefully it’ll make you feel more comfortable to let you know that you’re not alone, and let you know that there is an entire host of people who are trying to help and support you.
