Piper has type 1 diabetes.
One in twenty people like Piper
will die from low blood sugar.
will die from low blood sugar.
In fact, kids and adults are dying every day from low
blood sugar or complications caused by type 1 diabetes.
In the next few weeks, the FDA has a chance to show
it is leading the world in medical innovation, not
standing in its way. It will lay out the pathway to bring to
market the first artificial pancreas, a life saving
technology now under development, and the most
revolutionary treatment in diabetes since the discovery
of insulin. Three million kids, teens, and adults with type 1
diabetes are counting on the FDA to get it right.
Our lives and health are at stake.
www.jdrf.orgblood sugar or complications caused by type 1 diabetes.
In the next few weeks, the FDA has a chance to show
it is leading the world in medical innovation, not
standing in its way. It will lay out the pathway to bring to
market the first artificial pancreas, a life saving
technology now under development, and the most
revolutionary treatment in diabetes since the discovery
of insulin. Three million kids, teens, and adults with type 1
diabetes are counting on the FDA to get it right.
Our lives and health are at stake.
JDRF posted this as a full sized ad in the Washington Post and New York Times.
ONE in TWENTY???
Woah...
That's a pretty bold ad, right there!
And it's created quite the stir! People are talking about it, that's for certain.
I've been reading positive comments as well as negative comments... in all different places! Some are saying that it's about time. Some are saying that it's fear mongering and sensationalism. Some are saying that facts are wrong and that it's not that many. Some are saying that it's actually a low estimate. Some say it's too scary. Some say it's not the right message. Some are saying they love it. Some are saying they hate it.
Here's MY OPINION.... (because you want to know, right?!? I mean you ARE reading this blog!)
If you've been reading my blog for any length of time then you probably already know... I am so NOT a numbers person. I'm not into facts and figures. I'm not really into statistics. I think it's important and certainly has it's place. But it's not what I'm about.
I'm about emotion.
I don't write about the mathematical side of diabetes.
I write about the EMOTIONAL side of diabetes. The EMOTIONAL side of raising a child with type 1.
So....
Let's back track... No one ever told us when we were inpatient at diagnosis that you could die from a low blood sugar. I mean, it was implied... But I really wasn't aware that a person could just die in their sleep from an undetected low.
I will never forget shortly after diagnosis sitting in my parents living room and watching D Life on tv. We didn't even know the show existed and thought it was cool to find a show about diabetes. And then I saw a segment about a boy who passed away in his sleep while at college and no one could figure out why. And my heart stopped.
And then the blue candles on facebook... And the stories behind them. No, the LIVES behind them.
Yeah, it scared me. Still does.
Fast forward to April of this year. April 26th to be exact. The day before Sweetpea's 2nd Diaversary.
That night I watched my little girl as she laid her father's arms - eyes open but unfocused, crying and screaming, and convulsing due to a reaction to a low blood sugar.
I have never been more scared in my life. I seriously thought she was going to die right there, in his arms, at the top of our steps.
So, What do I think about this ad....
This ad changes nothing for me.
I'm not scared of the statistic in this ad. What I'm scared of is that what happened that night in April will happen again. Only this time we won't be so lucky.
I know some people see this as sensationalism. Hell, people have commented here saying that I shouldn't be so dramatic about a seizure. Because people have seizures every day.
Well, MY KID does not have seizures every day. And yes, it is true that people do have seizures every day. But it does not make it ok. Nor does it make it no big deal.
I guess I always just kind of thought it wouldn't happen to us. Sweets wouldn't have a seizure. We'd never use the glucagon... Well, it DID happen. And it CAN happen.
I know some people think the statistic is wrong. Overinflated. Well... I don't know about that. I'm not a "mathy" person, remember?!? But you know, I don't care if the stat is 1 in 20. Or 1 in 50. Or 1 in 100. Or 1 in 5000. It's too many. Enough is enough.
And knowing that there are devices available in Europe that will suspend insulin when a low blood sugar is detected? Knowing that there are devices out there that can help keep people safe... and we're just waiting on the FDA?
I'm very impatient. If there is something out there that could potentially save my child's life then I want it and I want it yesterday.
I know some people think it has a detrimental affect on our children. That people won't want to babysit or that it scares the kids.
Sweets won't be reading that ad... so I can't really comment on that! She's just not old enough yet and I just don't know how I will feel about it when she is...
But I know that there are people in our life - friends, family, co-workers - who think that J and I are crazy. They think we make too big a deal out of this. They think we are way too overprotective. They don't get why we can't just get a babysitter. Or leave her at a party. They think we are over the top.
Because they think, "It's JUST DIABETES".
We walk a fine line. We want our kids to been seen as "normal" kids. And yet we want people to take this disease seriously. And sometimes those things seem to conflict.
Maybe this ad was aimed at the FDA.
Maybe it was aimed at the D community - as a way of getting people to take action.
Maybe it was aimed at the NON-D community - as a form of education.
Maybe all of the above.
For what it's worth, I liked it.
It didn't scare me. I didn't change anything for me. I KNOW it can happen.
Personally, I think it's time. It's time to get real about this disease. It's time to wake people up. It's time to get involved and make things happen.
It's time for a CURE.
And I guess I'm pretty much OK with anything that gets us there!
But that's just MY opinion...
Here are a few links I thought you might like...
Click HERE to read the CWD thread that discusses this topic. Aaron Kowalski, from JDRF, posts and answers questions... good stuff.
Click HERE to read a post by Laura at Houston We Have a Problem. She gives you her opinion and also cites Jeffrey Brewer on the statistics.
Click HERE to read a post by Jess of Me and D. Her take as a PWD... (An awesome PWD, too!)
Click HERE to read a post by Jessica of A Sweet Life. She makes some great points...
Click HERE to read a post by Martin of Diabetically Speaking. As he says, "It's not about the Money".
** Anon comments are currently open so that everyone can enter the AWESOME GIVEAWAY for great stuff from Stick Me Designs and Tips 4 Type 1. However, I will only post comments with NAMES. You can say anything you want - I just want you to be respectful. And if you can't put a name to your opinion... then I'm not posting it. :) **
I LOVE THIS AD. It is something that needs to be put out there because it's reality. When I was a kid, the internet didn't exist, so you didn't learn on such an intimate level about T1D folks who died in this manner. Sure, you HEARD about it, usually a story relayed through the endo you visited, but it wasn't as real as it is today. This ad speaks to the fear that those of us (kids, adults, parents) live with each day because of this disease. The 1 in 20 and "bed death" isn't something we like to run around talking about, but it's always there, in the back of our minds. I just want to be able to go to sleep like everyone else and not worry about whether I'm going to wake up in the morning.
ReplyDeleteOnce again, I couldn't agree more, Hallie. Thank you for writing and sharing your feelings with us. It is so comforting to read your words, and I NEED that comfort, because so much about this disease is so hard. Your blog is like a warm blanket. Thank you...
ReplyDeletelove it! you already know we're on the same page here. thanks for sharing your perspective. you rock!
ReplyDeleteGREAT post. I agree with you completely.
ReplyDeleteThe number shocked me a little when I first heard about the ad, but really, I'm like you... we know it can happen because my daughter has also had scary seizures (twice). It doesn't matter the number, it matters that it happens at all, to anyone... especially if there's something out there that could make a huge difference.
I'll be honest. When I read that statistic, I felt as though I had been punched it the stomach. It scared me. Took my breathe away. BUT, like you, many people think I am over-protective and overreacting to diabetes. I WANT other people to get it. I want people to understand it's not just about checking sugar. I want other people to know it's dangerous and deadly. I want support for the devices to help keep our kids alive until there is a cure.
ReplyDeleteYep.... It IS time! Its past time. I liked the ad too.
ReplyDeleteGreat post, as usual, Hallie!
Thanks for the linky love --- we are so same same on this one!
ReplyDeleteI am mentally high fiving you right now, my friend. I couldn't agree more.
ReplyDeleteI have had Type I diabetes for 39 years, and have experienced a severe low (so bad I had seizures) only once in my life. I am very glad some family members rescued me. Whether or not that scary statistic is true, it was written in an ad in an effort to raise money. Money is what we need to get the artificial pancreas project off the ground!
ReplyDeleteYou know, even members of my own family question why we wake up at night to check blood sugar...even after multiple explanations. THEY are the ones who need to see this ad!
ReplyDeleteI don't believe the ad is putting false information out there; the real statistic put forth by the studies is anywhere between 6 to 10, so 1 in 10 to 1 and 25 will die from a low blood sugar. But most deaths caused by hypoglycemia are not listed as such on the death certificate. Therefore, the figure may be much higher. It is high time we start identifying, keeping track of and publicizing these untimely deaths of otherwise healthy children and adults with Type 1. Approximately ten died within the past year, as publicized on the DOC. Yet few Type 1s are active in the DOC; that would be a minority. I do not want a false sense of security; I want the truth. Else I would be less vigilant about protecting our child overnight. I have been chastised for testing our child too much, doing overnight checks. Yet she dropped to the ground the first week we brought her back from the hospital one hour after eating after playing in the yard, which involved no exercise other than walking around. We were able to revive her with glucose gel, then juice; did not have the Glucagon yet. I have not relaxed since. A recent 36 one hour after dinner, when we were not scheduled to test for another hour (she felt it, thank God). We all know how unstable their blood sugars can be. We all know drops can occur at times we do not suspect they could and are not scheduled to check... and we check every three to four hours around the clock. She won't be able to keep up the overnight blood sugar checks as an adult. What then?
ReplyDelete