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Type 1 Diabetes: Personal stories from patients and families

I know several people with Type 1 Diabetes and this past year I was involved The One Group for JDRF which helps raise money to cure Type 1. I set a fundraising goal, and its very rewarding to know that that money is being put to great use and has helped develop the artificial pancreas system. Checkout this story and please share it with anyone you know who has Type 1. This is BIG!

Craig Lucie, WSB-TV anchor/reporter

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Diabetes is scary- not only for the people who have it, but for their family and friends.

One of my closest friends has type 1 diabetes. She pricks her finger 8 to 10 times a day (up to 25 times a day when she was pregnant) and is constantly watching and mentally recording everything she eats, estimating how much insulin she needs. If she doesn't stay on top of everything, she ends up in the hospital.

One of the scariest moments I had with her was when she was visiting me. One morning she didn't wake up. She loves sleeping in, but it was almost 2 in the afternoon and I hadn't heard a peep coming from her room. Finally I cracked the door and asked if she was okay. She didn't respond. I shook her gently telling her it was time to wake up. Nothing. I shook a little harder. Finally she cracked her eyes and started mumbling, but she wasn't making sense. I didn't realize what was going on, but she was on the verge of a diabetic coma caused by low blood sugar, or "hypoglycemia.” I was told by another friend to feed her sugar immediately. So there I was, feeding my 23 year old friend orange juice the way a mother would feed her infant. She had very little control of her body. It took a good 45 minutes until she started communicating to the point where I could understand her.

Once she came out of her "fog" she had no recollection of what just happened. After that scary experience, I made her teach me how to give her an emergency dose of glucagon, which diabetics use to treat low blood sugar. If she's ever non responsive like that again, I'll have to jab a needle into her body to deliver the glucagon.

We have got to find a cure for type one diabetes.

Heather Catlin, Hot Topics Host 

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My God daughter has Type I diabetes. She did nothing to deserve it. But she fights it. She plays hockey, yes hockey, guitar, and anything else she puts her mind to. She is fun and on the go--but she has a pump and it's a part of who she is. How great for her would it be to be free of the pump. Free of worry.

John Bachman, Former WSB-TV anchor

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My niece Brynn is the bravest 6-year-old I have ever met.  She was just a baby – 22-months-old – when doctors swept her up and quickly loaded her into a medical helicopter to take to Children’s Hospital in Pittsburgh. Her blood sugar was over 700. Normal range is about 120.  I was in Atlanta, hundreds of miles away, but I will never forget that day.

Like most families, we didn’t know much about Type 1 Diabetes before Brynn’s diagnosis.   But you have no choice.  You quickly have to learn to count every carbohydrate, when to give insulin, when not to, when activities will affect blood sugar, and how to quickly respond when her blood sugar -  without warning - drops so low that it’s scary, and Brynn becomes incoherent and can’t control her body.

Through all this, Brynn has grown into a beautiful, sassy, confident, responsible and very bull-headed little girl.  Not all these traits sound like good ones, but they are ones that can only benefit someone living with Type 1 Diabetes.  She thinks nothing to grab her “D Bag” (diabetes supply bag), and check her own blood sugar, and she doesn’t care who is watching.   She was in awe when Miss Idaho showed off her pump during the 2014 Miss America pageant, and was happy to show off hers during our family beach trip the next week.

Still, living with T1D is far from rainbows and roses.   One day, when she was about 3 and strapped into her car seat in the back of my brother’s SUV, she quietly said “Daddy, I don’t want to have diabetes”.    .

My Brynnie will be able to whatever she wants to do in life.  She has the beauty, brains, personality and compassion to soar. Still, she knows she is different.   She knows she has a disease that may never go away.  Even at 6-years-old, she understands the severity of her diabetes and the importance of managing it every second of every day.   She’s still a child, but there is a large part of her childhood that went away that day, two months shy of her second birthday.

Brynn was too young to remember her life without diabetes.  I get chills just thinking about how the artificial pancreas will change her life.    It will allow her to concentrate better in school and not worry if her blood sugar is dropping low, or flying sky high.  It will take away the days that she just feels lousy, acts out, or cries because her head aches so much.  The artificial pancreas will let her be just like her sisters, her cousins and her friends.  It will let her be a kid again.    She and the millions of other children who grew up too fast while living with T1D deserve that and more!

It’s amazing to hear someone so young talk so knowledgably about something so complicated as the artificial pancreas.  But she knows exactly what it is.  She knows she wants it now.  In Brynn’s own words, “it will make my life better.  It will make my life easier.  I won’t have to worry.”

Kellie Burkett, WSB-TV producer

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For more than 33 years, it's been a part of my life. There is no break from this stupid disease, no magic pill, diet or exercise that will fix it.
That is not a cellphone attached somewhere on my clothes every day. It's an insulin pump with 23 inches of plastic tubing, and it's that drip line that keeps me alive. No, the other thing I carry isn't an MP3 players. It's a continuous glucose monitor, and part of it's also on my body somewhere. These tools are awesome, but I still have to prick my fingers multiple times a day, count the grams of carbohydrates in ever thing I eat or drink, and balance it out with my activity level. Every single day is a challenge, and controlling the disease doesn't stop when I go to bed or get tired of dealing with it. It's a costly disease, too, and I'm fortunate to have medical insurance,
I simply don't have a choice but to manage this disease the best way I know how. It's not going to hold me back and it doesn't define me. But as a busy mom and wife with a busy career and a million things I love to do, the thought of an artificial pancreas would provide a freedom that's almost hard to imagine.
Please researchers - keep going. This technology is such a huge step in improving the quality of life for not just me, but the millions of others in the world with diabetes. We are praying for the ability to live healthy lives without the serious complications possible with Type 1 diabetes.
I'll check my blood sugar as many times a day as it takes. When the artificial pancreas hits the market, hook me up.

Alexis Stevens, Atlanta Journal-Constitution reporter

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When I was 12 and losing alarming amounts of weight, scarfing donuts and urinating every five minutes, my family and I had no clue my pancreas was failing. But once the doctor saw me, she knew immediately. In the hospital, I had to learn how to handle syringes, test my blood sugars and go on a low-sugar diet. For years, my mom tracked everything meticulously for years in a Mead composition book.

While this wasn’t always fun as a teenager, my mom instilled in me habits of exercise and nutrition I might not otherwise would have followed. More than three decades later, I am in passable shape and haven’t experienced any diabetes-related problems – yet. The specter of losing my eyesight or my feet keeps me going. And thanks to an insulin pump I’ve had since 2007, the disease is even more manageable.

Last year, I also began using a continuous glucose monitoring system that feeds me blood sugar data every five minutes.

As a numbers obsessed person, I enjoy the challenge of keeping my numbers in balance while managing my ever present sweet tooth and predilection toward non-movement.

Type 1 diabetes in 2015 is hardly a death sentence. I am grateful that I live now and not in 1915 before insulin was discovered. If that were the case, I wouldn’t be around to write this.

Rodney Ho, Atlanta Journal-Constitution reporter

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Imagine counting every single bite of bread, apples, m&m's or any other food with carbohydrates you eat. Seems difficult, right? Now, imagine calculating the amount of a life saving drug called insulin you need for those bites of food and administering it through an injection or pump site 4-8 times per day.  Lastly, imagine doing that for the last 22 years of your life with no end in site. Sounds difficult, taunting and scary, right? Well, the artificial pancreas would help me be able to eat without thinking about every single bite of food or worrying about possible high or low blood glucose values every minute of every day. It will not cure me from my type 1 diabetes, but it will be a bridge to help control the disease without as much 'guesstimation'. I'm 27 years old and have lived successfully with type 1 for 22 years, but it has been a full time job controlling this disease instead of allowing it to control me. The artificial pancreas is the next step to finding a cure.  I'm looking forward to the future and pray that the generations to follow will not have to live with this disease the way that we currently do now.

Bethany Kinsey Jagdharry, RN, BSN, CDE living with Type 1 Diabetes for 22 years

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I was diagnosed 29 years ago, 10 days before I got married.  I was   relatively late.  I think the media age is 11 for boys and 12 for girls, so I was relatively late, but people now are getting Type 1 Diabetes at 40 and 50.

The thing about diabetes that may be different from other diseases is you always have it.  You don’t get sicker or better.  You have to live with it every day.  It’s your first job 24 hours a day, and then you have to get a job on top of that. For me, it’s much more of a mental challenge than a physical.  I know what I have to do, but after 30 years of having it, I’m sick of it.

Parents want cures for kids with diabetes, my Mom wants a cure, but I just want to feel better.  And I want to stop hurting myself, and the artificial pancreas is a great way to make this a background disease.

Today we have pumps.  I’ve had a pump for 30 years.  Pumps aren’t new.  A few years ago we got constant blood sugar meters that show our blood sugar 24/7.  But the 2 machines don’t talk to each other.    You wear both and then you’re the computer.  And you know what – we’re really bad computers.  We think about blood sugar maybe 10 times a day if you’re really diligent, and these things think about it a billion times a day.  They should talk to each other.

So the artificial pancreas is 2 external devices that together function like your pancreas.  And Type 1 diabetics make no insulin.  It’s an auto-immune disease.  My body killed the insulin making cells.

Type 1 diabetes is a chronic and life threatening disease.  It takes 15 years off your lifespan.  The problem is, people look at us and they say, you’re fine.  We didn’t lose our hair, but we’re challenged to not hurt ourselves all day long.  And it’s a chipping away.  It’s like sand and water.  The water just erodes the sand and the rock and you don’t see that.  But we feel it.

Hopefully soon that will change.

I was in two trials at the University of Virginia in the early versions of the artificial pancreas.  I couldn’t leave the hospital.  I have a pump and a blood sugar sensor, and every 5 minutes they would check my blood sugar and a computer algorithm would decide how much insulin to give me.   So pretty much all night long, even when you’re sleeping, they were pricking my finger and asking the wizard computer program how much insulin to give me.

It was astonishing.  My blood sugar was essentially flat for the first time in my life since having diabetes.  The biggest thing I noticed with the artificial pancreas trial was, when the stress was off mem, when I was able to quit the job of managing my blood sugar, I had so much more energy.  And my blood sugar being level made me feel better.

I felt like a new person.  You can’t underestimate the stress of fluctuating blood sugars, and the mental stress of being your own pancreas.  It’s really difficult.  I had a moment where I was like, well what do I do?  What do I do if I’m not worrying about my blood sugar. I guess I could real a book and not be listening for beeps.

I want to live my life.  And one of the things we always say – Type 1 diabetics are sick of having to sacrifice the quality of life for the quantity of it.  So if you obsess about your blood sugar all day long, you’re going to live forever.  But do you want to spend your whole life doing that?

So hopefully, the artificial pancreas device will allow us to be living our lives and not hurting ourselves all the time. It means you get to live your life.

Kris Bagwell, Type 1 Diabetic 

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The ER doctor was just fabulous with me when Mary Morgan was diagnosed.  She just reassured me that it was an illness she could live with and live a long life.  I even remember she said to me, ‘she can even have cupcakes at birthday parties.  It’s just something she’ll have to manage’.

It did get scarier from there because we went upstairs in the hospital and because Mary Morgan’s blood sugar had been high for so long, she slipped into a coma.  They gave her a 50/50 chance of surviving the night.  They did tell me if we hadn’t come to the hospital that night, she wouldn’t have woken up that next morning.

I think part of the reason the illness has been so hard for us is because the diagnosis was so traumatic.  Not everyone has the same experience, but the illness is definitely a difficult one.  More so than most people think.

After Mary Morgan’s diagnosis, everything changed.  I left my job  I stay with her at night.  They tell you in the hospital the most frightening part of diabetes is dropping low because it could cause seizures.   It can cause dizziness and falls and accidents.  Dropping too low can cause death.

Type 1 diabetes is something that you have to be on top of.  And like any illness, you can’t control it.   Because I know that, I check her blood sugar through the night.  I still do that a lot.  I still stick her finger at 2:00 in the  morning.  Or I at least make sure her breathing is okay.  Sometimes when she drops low, she makes little squeaky noises in her sleep.

Before her diagnosis, Mary Morgan used to be a lot more carefree.  And so I have seen her grow up and be more mature.  She has to take responsibility like I don’t have to see a lot of her friends having to do.  It just takes a lot of responsibility for young people.  Type 1 Diabetes, it’s 24/7.  She can’t step away from it.  It’s always with her.  She can’t put a bite of food in her mouth, she can’t go out and jump on the trampoline or go for a walk without it always being there.   Even when she’s sitting in class and trying to focus on her work, it’s still raging through her body.

The artificial pancreas is the next best thing to a cure.  We have already told her endocrinologist we’re ready for it now.  It’s peace of mind.  It’s just going to be wonderful technology.

Georgia Collier, Mom to 13-year-old Type 1 Diabetic Mary Morgan Collier

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Hearing the diagnosis is a shot to the heart.  If I could take the blow for her, I’d do it in a heartbeat.

You’re always on guard with Type 1 Diabetes.  It’s a constant thing.  Every move you make can affect your blood sugar.  And your blood sugar can affect you.  So you have to be on guard.  If you’re going out with friends, or spending the night somewhere you have to be on guard in case something happens.

The artificial pancreas will give us peace of mind to make Mary Morgan’s life even more regular in a sense that she can focus on the other things in life.

Kurt Collier, Mary Morgan’s Dad