In the 9 years since I’ve had Type 1 diabetes (T1D), it’s been amazing to see what parents of children with T1D have done to improve management of blood sugar levels. Well, I learned today that parents are now hacking into diabetes management systems and creating their own form of the artificial pancreas (at a much cheaper cost than the official FDA-approved $7,000 device).
And all of this because of a security slip-up in 2011 – when many Medtronic insulin pumps were left open to hackers and apparently do-it-yourself (DIY) parents. Some companies have now hired or consulted with those DIYers to improve products and share ideas. It’s hard to believe that I could one day owe my life to someone who had the guts to hack into an automated system and tinker.
As one parent said of parents with T1D kids, “They know their kids the best, and sometimes technology or medicine is slower and doesn’t know what we need as much as we do.”
Patient advocacy at its best. Continue reading
Today the FDA approved the first-ever hybrid closed loop insulin delivery system (aka the artificial pancreas). When I read JDRF’s news release I certainly felt inspired and excited for thousands of Type 1 diabetics around the world. Continue reading
I walk down the cracked sidewalk along Wisconsin Avenue, past the Starbucks and Regal movie theater in Bethesda. My fingers start to tingle, and my heart rate increases. Suddenly I feel extremely weak. Each step is an effort, and I feel a steel box closing in around my heart. I am out of breath. My limbs start to shake, and my vision is less reliable. I can’t read the street sign in front of me. I stop at the next intersection and look for the glucose tablets in my purse.
I scramble to chew four of these tablets quickly, leaving a powdery residue on the tips of my fingers. I lean against the side of a brick building and call my supervisor. I’m supposed to be in a meeting in two minutes but until I get my blood sugar back up, there’s no way I’m making it back to the office without help. I’m only a five-minute walk away, but right now my vision is blurry and my hands are shaking.
My supervisor doesn’t answer his phone so I call my work colleague and let her know of the situation. I usually don’t tell people when I’m having a low blood sugar, but in this case, I realize it’s the safest thing I can do in case I do have a seizure in the middle of the street. My work colleague has severe allergies so we’ve both agreed to be each other’s medical back-up. I know where her EpiPen is, and she knows what to do if I pass out from low or high blood sugar. Continue reading
“I imagine being diagnosed as an adult would be harder because you remember life without it.”
“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).
We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.
I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.
I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.
And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65. Continue reading