There are few people as fierce as parents of a child with Type 1 diabetes. I know this firsthand – I am one of them. We are parents instantly thrust into caring for a child who has needs beyond our experience, but not beyond our capabilities. We embrace a new reality as instantly as the diagnosis is handed down and we quickly become relentless advocates. As round-the-clock caregivers, we wrap ourselves in an armor of procedures and information to protect our children. And, in most cases, everyone survives, thrives, and “lives beyond” in ways we highlight and encourage at Beyond Type 1.
Recently, however, there have been countless stories of US children lost to a disease neither their parents nor doctors even knew they had developed.
Their symptoms were mistaken for the flu or strep throat and by the time the true nature of their disease was discovered, their bodies, without the ability to produce insulin, had begun to burn fat for energy. The resulting molecules, ketones, essentially built up and poisoned their bodies, resulting in diabetic ketoacidosis, or DKA. For children like Kycie Jai Terry(5), David M Brown II (4), Angela Elizabeth Robinson (11) whose blood sugar at diagnosis was 1600, and so many others, they never had the opportunity to “live beyond.” Their Type 1 diagnosis came too late and their lives were cut short.
An estimated 30% of children diagnosed with Type 1 are in DKA at diagnosis in the US, and that number varies in countries around the globe, from 12% to an astounding 80%. DKA is the leading cause of mortality in childhood diabetes. This is absolutely, unequivocally unacceptable. The reality is that life is unpredictable and every day all over the world, someone receives a diagnosis that alters his or her reality in an instant.
The unacceptable tragedy with Type 1 is that there is a safe, non-invasive, inexpensive (on average 24¢) way to safeguard lives and protect futures.
A simple urine test or a finger prick for one drop of blood is all that is needed, but people have to know the warning signs and have to advocate for testing. When my daughter Mary was diagnosed, I was frightened for her and for our family – but a diagnosis meant that we were able to get her treatment, it meant that she was coming home from the hospital and that we would adjust, carry on and live.
While a Type 1 diagnosis means life-long dependence on insulin, constant monitoring and an increased risk of long-term complications, life with Type 1 can be endured; people with T1D do thrive and live beyond their diagnosis. The way to ensure that people with Type 1 do succeed is for the global population to take note of the warning signs, for parents and patients to demand regular screening, and for medical professionals to take the extra step when assessing patients and ensure their symptoms aren’t masking something greater.
We all must take on the responsibility to share what we know, to pass it along in whatever ways we are able. There are few people as fierce as parents of a child with Type 1 diabetes and when spurred to action, wield a great deal of power. Take 60 seconds to pass along what you know because you never know who’s life you might save. No one, especially a child, should die because we weren’t paying close enough attention.
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