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Mama2H
07-31-2008, 11:22 AM
If you read my other recent thread about our local paper you will see that they are now trying to make things right :D I would love to get some of your answers to this question that the reporter is asking for the article she is going to do. Sooooooooooooo

What do YOU want people to know about Type 1 Diabetes?

KelliTwins
07-31-2008, 11:24 AM
I want people to know that Greg won't just outgrow this. I hear that so often! "Don't worry...he'll outgrow it in a few years!" It makes me insane!!!

mommyofAx4
07-31-2008, 11:26 AM
that it is a autoimmune disease that nothing you do can prevent it or delay its onset no matter how much you exercise or eat right. also i get tired of people saying oh she will grow out of it so i think people need to know this is a life long disease that our children will have until a cure is found.

Pam H
07-31-2008, 11:27 AM
I wish people knew that this is more than a "lifestyle change".

Denise
07-31-2008, 11:27 AM
oooh I dunno..maybe that Diabetics CAN eat sugar and that it's not caused by anything the EAT! :o Ya, you picked a great day to ask this one!:(

miss_behave
07-31-2008, 11:28 AM
That we can eat whatever we want (yes, even sugar! :rolleyes:) as long as we dose insulin for it. That its not some easy peasy insignificant thing to deal with, that its unpredictable and hard to manage.

malyssa
07-31-2008, 11:30 AM
Hmm. If I had to pick one thing for people to know about type 1, it would be that type 1 is a totally different disease from type 2, and shouldnt really be compared to one another. I'd have to say, that is the one thing that annoys me the most...when people say things like; "Well, exercise more, or eat less." or the famous one, "my grandma/grandpa has that, but they're overweight." or something like that. It makes me pretty crazy. :o

mommyofAx4
07-31-2008, 11:32 AM
also wanted to add i think that people dont take it seriously they think well just dont give her sugar anymore and she will be fine people need to know its so much more that every day is a struggle for these kids.that it changes all the time.also it is alot more that these kids go through then taking a pill every day its not only physical but also emotional

TheFormerLantusFiend
07-31-2008, 12:11 PM
-You can be diagnosed at any age. 2 weeks or 50 years.
-Skinnier is not healthier.

Mama2H
07-31-2008, 12:21 PM
*Just because my child looks healthy doesn't mean that her disease is easy to manage, it takes a lot of work to keep her healthy
*My child can eat anything that anyone else can, instead of her body making insulin like the other kids we must inject it with either needles or an insulin pump.

buggle
07-31-2008, 12:28 PM
I don't know what I want them to know. I guess I want them to realize what a serious and dangerous condition this is, yet I don't want them showing pity to my kid or having lower expectations for him.

I haven't run into people who don't know it's an autoimmune disease yet, so I haven't had to hear the comments about eating too much sugar or bad diet or anything. I do think that people have no clue (I didn't before) about the huge effect this has on the life of the child and their family and how intense this is. I think I'd like people who are close to me to get what a heart-breaking thing this is for parents to deal with. I think they underplay how serious it is and what it takes to manage it.

OSUMom
07-31-2008, 12:32 PM
Insulin is not a cure. It's life support.

Treysmom
07-31-2008, 12:37 PM
Its probably already been said.

I want people to know type 1 is not easy to manage. It can be up and down one day and great the next.
24/7 managing

StillMamamia
07-31-2008, 01:02 PM
I would like them to know:

what it is (auto-immune disease)
how it happens (beta cell destruction)
what it means (insulin for life)
what the pancreas is
what is glucose and why it is important
how insulin is given (MDI and pump)
the average of daily blood glucose tests and how it's done
what the symptoms are
what DKA is
what are the signs of a low & what to do
what are the signs of a high & what to do
what is glucagon & when do you give it
the difference in earlier d-management vs today's
what carbohydrates are and how they are processed
what foods are 'carbs'
misconceptions about the disease

I would also ask them to mention that diabetes is not just Type 1, but Type 2, Type 1.5, monogenic, etc, and that they should dedicate other future articles to each of these.

mom2two
07-31-2008, 01:13 PM
Looks like about everything has been covered. What I would like people to know about Type 1 is that it is a very serious disease. I've encountered some people who just think "oh just diabetes". I didn't actually GET IT until it entered our lives so I am so glad you are taking the time to do this article!

Lee
07-31-2008, 01:16 PM
I think what everyone else has said - with reinforcement on how much work it is to keep our kids healthy...

wilowndmomof3
07-31-2008, 01:26 PM
I want people to know that they didn't get it from the way I fed them.

It is a serious condition that can be life threatening if not taken care of.

I am not an over protective wife and mom, I just want them around for a really really long time :D

TerpSteph
07-31-2008, 03:38 PM
I would like them to know:

what it is (auto-immune disease)
how it happens (beta cell destruction)
what it means (insulin for life)
what the pancreas is
what is glucose and why it is important
how insulin is given (MDI and pump)
the average of daily blood glucose tests and how it's done
what the symptoms are
what DKA is
what are the signs of a low & what to do
what are the signs of a high & what to do
what is glucagon & when do you give it
the difference in earlier d-management vs today's
what carbohydrates are and how they are processed
what foods are 'carbs'
misconceptions about the disease

I would also ask them to mention that diabetes is not just Type 1, but Type 2, Type 1.5, monogenic, etc, and that they should dedicate other future articles to each of these.

I think this is spot on and would have the most effect on educating people who don't understand what Type 1 D is. The only thing I would add is how expensive it is to manage diabetes effectively. We are fortunate to have good insurance, but my heart breaks every time I read a post from someone who is struggling to pay for supplies. I also worry what will happen when my son is too old to be covered on our policy.

purplewowies
07-31-2008, 03:41 PM
Hmm...

I WANT PEOPLE TO KNOW KELLY McKAY WAS COMPLETELY WRONG ABOUT TYPE 1 DIABETES!!!!!!! (yes I'm mad)

Mom2Jordan
07-31-2008, 03:41 PM
I want people to know that I have a healthy, happy child. Diabetes means we make a lot of lifestyle changes and higher maintenance but at the bottom of it all she is still healthy and happy and a normal kid. People don't always need to feel 'sorry'. She's fabulous. ;)

sugarmonkey
07-31-2008, 03:59 PM
That diabetes requires constant care. You have to be on the ball all the time. Just because their numbers are fine one minute, they can change quickly.

GAmom
07-31-2008, 03:59 PM
I want people to know that they didn't get it from the way I fed them.

It is a serious condition that can be life threatening if not taken care of.

I am not an over protective wife and mom, I just want them around for a really really long time :D

Ditto, well said!

I want them to know that eating all the sugar you want is not going to give you type 1

I want others who know that a type1 child is in their care, Take Care of them. They need our help for lows and highs.
Don't minimize their needs, it can truly be life or death.

karpoozi123
07-31-2008, 04:01 PM
Yes I might be a few pounds overweight but I didn't "eat my way to diabetes" :eek: and I couldn't have prevented it!

(I have this complex that because I am overweight, when I tell people I have type 1 they think type 1 means you are fat and I am giving a bad name to all type 1s :()

Ellen
07-31-2008, 04:03 PM
I want them to know that while we work hard to raise our children to reach all their goals and live long and healthy lives, type 1 diabetes is a potentially devastating and debilitating disease that must be cured. There must be significantly more funding for cure-focused research. Insulin is not a cure, nor will the closed loop pump or artificial pancreas be a cure for diabetes. Type 1 diabetes is on the rise, even though the CDC refuses to track it as other countries do.

brendansmom
07-31-2008, 04:04 PM
What I want people to know has already been covered already. However, there have been a couple incidents this week that really bug me. So I would like people to know that diabetics can eat sugar and carbs. Diabetes is not easily manageable. The numbers will fluctuate for whatever reason. I tried to explain this to one of Brendan's friend's mom yesterday and she just looked at me and said "yeah right".

I would like people to know the difference between type 1 and type 2. I would also like people to not be so judgemental about Type 1 diabetes.

Milissa
Mom to Brendan age 11, dx'd 1/21/05 pumping 1/26/06
Mom to Katie age 3 born 1/31/2005

OSUMom
07-31-2008, 04:17 PM
I don't know how you say this, but people will ask me how is Dean doing? He's doing great -- but during any week (day) his blood sugar can drop below 60 and go above 300 many times even though he's diligent in his care. Type 1 diabetes can vary who knows why when you're trying your hardest - and you don't see the long term effects for awhile. So when people say how's Dean doing - I say he's doing good - and that's all I usually say. How can we put that into one sentence? I guess that's it's not easily managed. :confused:

karpoozi123
08-01-2008, 02:24 PM
Oh, one more thing I forgot:

We probably know a little more about what we are doing to treat our diabetes than you do.
-Did you check your sugar?
-Should you be eating that now?......


And:

We DON'T want to hear about all your grandmothers that died of diabetes. Contrary to your warped opinion, it will NOT make us feel better.

:mad:

ScottB
08-01-2008, 04:58 PM
It's not so much what I want others to know about T1 specifically but more so the term diabetes and sugar. As far as D goes, I wish people would stop piling both T1 and T2 together and realize there is a significant difference between the 2 and stop assuming that it all has to do with diet, in fact they shouldn't assume anything because not all T2's are fat and out of shape and not all of them got T2 from poor eating habits either.

As far as sugar goes, stop assuming that my child can't eat sugar at all and that a sweet snack is bad sugar while fruit is a good sugar. It doesn't matter what kind of sugar it is, dextrose, glucose, sucrose, fructose, any sugar that ends with an "ose" is something my sons body can not convert into energy without the use of insulin.

grantsmom
08-01-2008, 05:44 PM
I am so glad they are going to clarify and educate!

I would like them to know that type one is an autoimmune disease. That my son, nor his family, DID anything to cause it (eat too much sugar, not exercise....) . I think they need to point out what the symptoms are when someone is high and when someone is low. I think they can explain what a stranger could do if someone appears low (call 911, place them on their side so they do not choke on vomit, rub honey on their gums....)

I NEVER would have know what to do if an adult or child wore a diabetic braclet and appeared low. I sure do now!!! I think the more they can educate it may save someones life OR get a child dix'd early!

Way to go warrior MOM!