Before you read this, please remember that I am a huge advocate of JDRF and all they do. In my humble opinion there is no machine with more power and a better constructed engine chugging toward the cure (and yeah, better treatments) than JDRF. This blog post in no way means I think any less of them. I say this because sometimes I think we’ve all gotten too touchy and lost touch with the fact that sometimes – most of the time – varied insights help things. So in other words, I’m not questioning their “1 in 20″ ad. Rather, I’m adding another angle to the same effort. I hope you’ll read this, consider my take and sign on at the end, adding your “one in a million” (or in some cases two or three in a million) to this post. Yours could be yourself, your child, a friend, my child, a parent. Let’s get a long list of “one in a millions” to share. Thanks.
Hi, I’m Moira. I’m not a powerful agency, but I am part of a powerful advocacy group that you probably know of – I’ve been a proud member of JDRF for years and years now. However, that’s not all I am. If you look closely, I am an individual human being, with my own individual reasons for wanting you to accelerate the progress of better treatments for diabetes; particularly, the “artificial pancreas project,” as we’ve all come to call it.
I know you probably saw the “1 in 20 statistic” in the NYT and WSJ ads. Well, here’s my personal shocking statistic: One in a million.
As in, my daughter Lauren, who has had Type 1 Diabetes for more than 14 of her 20 years of life, is a one-in-a-million young woman. It’s not just her drive and ambition (she’s at George Mason U, majoring in communications and politics and minoring in non profit studies). Nor is it just her incredible sense of humor; or the way whenever we go anywhere that has a microphone involved, she always seems to be the one who ends up at the mic – with a crowd roaring along with her. Yeah, she’s one in a million that way, but she’s one in a million in her diabetes experience too.
That’s because every single person who has Type 1 diabetes has a unique experience with it. For some, it’s crazy lows that confuse and even hospitalize them, like my friend Pam Sagan told you in a recent hearing. For others, it’s the difficulty of blending life as a mom or a teacher or a CPA or whatever with keeping on top of diabetes. For my girl, it has included rough times and easier times; scary times and relatively okay times. I argue that it should be enough that my one-in-a-million deserves the best tools we can offer her in her life with diabetes. I’d like to share with you a peek into her one-in-a-million life.
*When she was 15, Lauren was one of the first kids in America to go on a CGM. It wasn’t part of a trial; we did it on our own (she was the first young kid in Boston to go on a pump years before that – we have worked to be innovators and leaders from the get go of this disease in our lives). I noticed right away the benefits to the CGM and pump (or so I thought). I could work with “averages in range” better – something that APP Guru Dr. Aaron Kowalski says will some day perhaps replace the A1c test in importance. I could fine tune her basal rates and keep her in range better. This is what I didn’t realize: the little ways it would make her life better.
One day we were driving along in the car. She was sort of mindlessly staring at her fingernails and hands. Suddenly she broke into a huge smile and started doing a kind of “spirit fingers” with both hands,
“Oh my Gosh, mom!” she said with more enthusiasm that teens usually show. “My fingers! I have never seen them without calluses and holes in them!”
I could have cried. Talk about the simple things. A CGM meant “only” checking about three times a day with a finger poke. To mean that meant less effort. But to my one-in-a-million, that meant the simple joy of looking down at her hands and not seeing evidence of chronic disease. Isn’t that kind of pure joy, so easily found via the approving of tools and technology, worth your extra effort?
She stopped using her CGM, and she awaits a better one to come along and give her fingers a break again. She hated that it was two things attached to her body. She hated the scars the large insertion needle left on her. She craves a newer model that is sleek, smart and easy to use. That’s only going to happen if you help it happen.
*Like most young woman, my daughter looks forward in life and wonders. Unlike most young women, though, she wonders if she’ll ever have the strength to go through pregnancy with diabetes on board. “I just don’t know if I’ll ever be able to do that, Mom,” she says of the hard work a woman (and her partner) must go through to have a healthy baby when you have diabetes. Yeah, everyone says “you can absolutely have a baby now,” but do you, FDA folks, have any idea what that means? A good, smart pump could solve a lot of that. I want my daughter to see a clear path in technology and approval of technology that shows her down the road, there will be tools for her to take on that challenge without as much stress and hard work (and possibility of not getting to where you want to get) as there is now. You could help me say to her, “The time, and the product, is coming. No need to fear.”
*When she was little, she was always one in 800 at her school – the only kid there with Type 1. Then another girl was diagnosed, one she had never really been close to. When I told my still-little daughter about it, her knees literally buckled under her. She steadied herself and then said “I have to help her.” I told her that just because the other girl had diabetes now, she did not have to befriend her. My still-little girl looked at me with the eyes of a wise woman and said “She needs me Mom. I have to help her.” And she was right. She deserves better tools because she helps everyone she can, every day, even when she is struggling herself.
Those are just a few stories. There are many more about my one-in-a-million girl. I tell you because while I fully understand there was a need to get you to listen to the diabetes world with the 1-in-20 claim, I wish I lived in a nation where the health, happiness and prosperity of even one person in a million would be reason enough to help make better tools for medical treatment a reality.
And perhaps I do. Because here’s the thing: there are a million – or more – one in a millions out there. Each has a story. Each has a personality. Each has dreams. Each is tied to you – FDA folks – and the power you have to move things along to a better way of living.
One in a million. I know it’s not sexy and I know it’s not shocking; but it sure is meaningful to me. Here’s hoping it is to you as well.
Read on to the comments for more “one in a million” examples (and here’s hoping people will share them here).
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