It's High Time we had a Diabetes Group here (with a bonus video)

[berni_mccoy]

As many of you know, I am the parent of TWO boys with type-1 diabetes. My youngest was just diagnosed this June.

I am a little surprised that there isn't a diabetes group here yet, so I'm officially requesting it.

I need TEN DUers with donor starts to second it and commit to participation.

Here's why I think this is completely appropriate discussion group for DU:

1. The JDRF and ADA are active, often, parent and patient run lobbyist of the government for medical research funding
2. The JDRF is one of the largest activists for stem-cell research bills and has succeeded twice in getting a bill through Congress (I'm an active member of the JDRF Gov't activist group)
3. Many DUers have diabetes

Think about this for a second: NIH estimates that by 2009, ONE IN THREE AMERICANS will have diabetes. And yet, this year, a Diabetes Research bill is expiring. If Congress does not renew this bill, Diabetes Research funding will be cut in half. Consider this: the government only spends $433 million on research for diabetes, while they spend over $2 billion on heart disease. Ironically, the leading cause of heart disease is diabetes (over 60% of cases of heart disease are attributed to diabetes). Now consider that we are spending $3 billion in Iraq PER WEEK ALONE. 20 million Americans suffer from type 1 and soon, ONE IN THREE AMERICANS will suffer from type-1 or type-2. If we could spend just one week of the funding for the Iraq war on diabetes research for a YEAR, over 100 MILLION AMERICANS WOULD BENEFIT and over a billion people world-wide.

Please join me in this submission for a DU Diabetes Group. For some inspiration, please see this video we made about life with diabetes: http://www.youtube.com/watch?v=ad5OCLgiDYE

[bluethruandthru]

1. Count me in!

My daughter is a Type 1 diabetic. She was diagnosed at the age of 10. I would love a Diabetes group.

[IADEMO2004]

2. Join me up

[Poiuyt]

3. I don't have diabetes, but I would love to see it.

I have some close friends who are

[ironflange]

4. Sure!

I belong to the club myself.

[KansDem]

5. Count me in! We could call it the "Extra Sweet DUers Forum"

Having been diagnosed with the disease 4 years ago, it has been front and center in my daily life...

[ironflange]

30. Or how about the "Sweet Peas?"

:rofl:

[KansDem]

42. LOL!

It took me awhile, but I got it!

[efilon]

6. Type 2 invited?

If so, count me in. I was diagnosed three years ago. Just found out my brother and a niece have both been diagnosed also.

[berni_mccoy]

7. Absolutely. The consequences for both forms is the same. We need a cure... now.

[leftchick]

8. god your video made me cry....

My 12 yr old was diagnosed with T1D in January. Neither of us has adjusted totally yet. I look at my younger son all of the time and worry.

Count me in.

:hug:

lc

[berni_mccoy]

10. Leftchick, I'm so sorry. It takes a while to get adjusted...

And you never really do. I was just talking with my wife (we are avid hikers)... it's like carrying a 100lb pack all the time. At first, it's heavy, but then you get used to it. Your strength builds up and soon you can't imagine not carrying it. Every now and then you set it down and take a break, which makes it 10x heavier when you get going again. But then you do and it gets easier. But it is never really easy.

We never fully got our strength up until this year finally. Then in June, our youngest got it.

We worried about him too for a long time, but there really is nothing you can do. Fortunately, our diabetes eyes caught it early and we didn't even need to go to the hospital. It was as good as a diagnosis experience can be. I guess that makes up for the near-death experience our first son had (he went into a coma and was in ICU for a week when he was diagnosed).

[leftchick]

11. omg....

That is scary what happened to your son! Luckily, and I am not sure how, I connected the dots and got my son to the hospital before he was too bad. His BS was over 900 but since they never drink soda and rarely juice he had been diluting with water. The Doctors say that is what kept him out of the ICU.

The fact that he is going through the whole seventh grade hormone craziness is complicating the issue. He and I argue and he lashes out. He ctually went through a depression for a few weeks. <sigh> It sucks!

I have also, after much research, concluded that Diabetes is a racket. Big Pharma is making a bundle on this disease alone and it makes me sick. I so want to see some stem cell research funded soon. It seems so logical that is where a cure will be found.

Thank you so much for your kind words. I look forward to the forum! :)

[berni_mccoy]

13. We were not so lucky...

We had all been sick with the flu (and you now know how that complicates things) and our oldest had already been diabetic at that point. His ketones were off the charts as was his blood sugar, and we just didn't know it as his true sickness was masked by the flu. We were lucky that he made it.

I agree with you about the issues, but I truly believe the insurance companies are far worse than the pharmaceuticals. Medtronic has been very good to us while we constantly must stay on top of insurance. It isn't so bad since we are with Blue Cross, but we have been with some bad coverage through this and it has made it infinitely worse to deal with. Ask me to tell the story of the $15,000 ambulance ride the insurance company didn't want to pay for some day when I have the time. I literally spent 80 hours battling it out with them. Moore's movie Sicko was a truly needed wake-up call.

[leftchick]

19. I hear you about insurance

I thank my lucky stars we are covered pretty well. For now, who knows?

The first time I picked up his insulin I was literally shocked at the price before insurance co-pay! I mean Shocked! All I could think of were all of the uninsured who could not afford their life saving medicine. :cry:


Tell me, I was told to discard the insulin 30 days after opening no matter what. Now, ours sits in the fridge and it never heated. Why waste almost a whole vile every month? It makes no sense. I have had an adult T1D tell me he always finishes his viles then gets new Meds. He uses Humalog my son has Novalog. I wonder if that is the difference. I have googled and all I find is the Pharma recommendation which is one month. I would like to know for sure.

Thanks again.

[Celebration]

38. insulin cost

Oh, don't get me started........we don't have a problem with insurance companies as much as we have with pharmaceutical prices. Get this-- when my daughter was first diagnosed 23 years ago, NPH and regular insulin were something like $12.99 each. And they lasted a long time!! There is a racket going on now, as the FDA refuses to print rules for producing generic insulin. Well, guess who owns the FDA!! Meanwhile all the older insulins that are cheaper are taken off the market. Well, do we have enough for a group? We can discuss all this.

[Zookeeper]

9. Yes, Berni, it's a great idea!

My now 15 year-old daughter was diagnosed with Type 1 when she was four. And my MIL has Type 2.

Thanks for the suggestion!

Count me in.

[berni_mccoy]

12. OK, we need THREE MORE DUers with donor stars... almost there.

:kick:

[malaise]

32. K & R

I don't have diabetes but think this is a great idea. My dad had adult diabetes.

[road2000]

14. Just-diagnosed Type 2

Sorry I don't have a donor star, but I would be interested.

My heart goes out to all of you whose kids are diabetic.

[Lucinda]

15. I'm pre-diabetic but I'll participate

thanks for suggesting this

[Lucinda]

23. Checking back as requested n/t

[seemunkee]

16. My father died from complications

He went blind from it when I was 4, his kidneys failed when I was 16.

As much crap as Dean Kamen has taken for the Segway we should applaud him for creating the first insulin pump and a portable dialysis machine.
The dialysis machine we had for my dad was the size of a dishwasher.

[berni_mccoy]

22. I agree about Dean Kamen... his inventions have improved the lives of millions

Please sign onto the DU Diabetes Mission Group here if you would like the group: http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=1890792&mesg_id=1894337

[Celebration]

17. Diabetes group=great idea!!

I have a daughter with Type 1, diagnosed........23 years ago, at age 3.

[Raster]

18. Count me in!!!! Diagnosed four years ago.

Diabetes Forum PLEASE!

[berni_mccoy]

20. OFFICIAL MISSION: PLEASE REPLY TO THIS TO VOICE YOUR SUPPORT

We've got at least 10 DU donors, now for the official mission of the DU Diabetes Group:

To raise awareness, share information and provide support for people with diabetes, their families and loved ones, and to engage in activism that will promote research for a cure and improve life with diabetes.

[Lucinda]

24. n/t

[Zookeeper]

26. Again, I'm on board! n/t

[Celebration]

27. Okay

Is this what I do?

[berni_mccoy]

28. Yep, thanks

[berni_mccoy]

29. wlucinda agrees

see response here: http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=1890792&mesg_id=1894628

[kdmorris]

31. Count me in!

Watching that video made me feel kind of bad about whining about having Type 2 at 38. I can't imagine how hard it must be to have a child with Type 1, much less 2 of them!!

[Kurovski]

36. I vote for it.

Dad had it.

[leftchick]

39. count me in!

thank you for this!

[blondeatlast]

44. I'm in--and an old hand at this (I remember pills dropped into urine...)! Thanks. nt

[efilon]

46. Another donor for support of this group!

[murphymom]

47. Count me in too!

Type one diabetic here for 30+ years.

[KansDem]

49. Include me!

I think I would find a DU forum on this to be very beneficial!

[blondeatlast]

21. We sort of already do. Several years ago, the Chronic Disease Group was created.

It was proposed originally as a Diabetes group, but I (a forty year IDD survivor) thought it might be better to open it up to anyone survivng with a chronic condition.

It's pretty slow moving, but everyone there is wonderful and supportive and universally possess the best damn crying shoulders I've ever encountered.

Please check it out; it's been a godsend to me through the ever-increasing rough times...

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

[Lucinda]

25. Still like the idea of a specific diabetes group - but am on my way to the group

to check it out...thanks for the link

[liberalnurse]

33. Heck Yea!

Excellent Recommendation! I'm in. O8)

[Crabby Appleton]

34. It would be good to have a group

Diagnosed type 2 a few months ago.

[WhiteTara]

35. Yes, count me in. I would like to have

a diabetes group, too. My partner is type 2 and so, it is my life style too. Thanks.

[Pastiche423]

37. I'm in!

Thanks.

[PRETZEL]

40. I would most certainly love for a Diabetes Forum here

I haven't been able to donate for the last year but would most certainly appreciate all the input that would be held within this forum.

Like others my step son was diagnosed last year with Type 1. He was 12 at the time. My mother died from complications associated with Type 1 many years ago. My ex-wife is a dialysis nurse who has had to deal with patients who have suffered many diabetes related illnesses. This is a disease that knows no socio-economic bounds and kills savagedly.

[blondeatlast]

41. I'm in, but please, gang, check out the Chronic Health Conditions Group.

I'lll just come out and say it--it was partly my brainchild and we share many of the same concerns (and secondary complications) as many in that group.

[Jennicut]

43. Having diabetes is an everyday part of my life too

I was diagnosed as a type 2 3 years ago at the age of 28. Its been a real frustrating experience ever since. I had two wonderful little girls with back to back pregnancies and I think it was just really hard on my body. I developed gestational diabetes while pregnant with my second daughter. Usually it goes away after the baby is born or it can develop later in life. I must have been prediabetic as mine just never really left. I always had low blood sugar issues starting in college and that can be a sign your blood sugar is not regulated. Some people can get type 2 diabetes from eating too much refined carbs or being obese but I was only a few pounds overweight from the pregnancies. My endocrinologist told me I don't fit the typical type 2 diabetic profile and at classes at the local hospital I was the youngest type 2 diabetic there (though children can get it from being obese and un active)yet I was on the highest amount of medication. I take Insulin shots every night and I take an oral medication, Medaformin, so I can take less insulin. When you are on insulin it is really hard to lose weight especially after having two babies back to back but I have lost 7 pounds recently by just exercising really hard 3 times a week. I don't know where I would be without my parents as they help pay for my medication and a great husband who can tell when my blood sugar is getting low and I need food fast. Still, its hard knowing you have a lifelong disease that will never go away. Its always with you. The only good thing about it is it helps me be grateful that I am alive and life is precious. I need to take care of myself to be here for my girls and my family.

[IDemo]

45. Star-less here, but like the idea

Type 1, 45 years

[nadinbrzezinski]

48. You got it

and you are right, we should have one

[berni_mccoy]

50. UPDATE: ====>

At the recommendation of a couple of people on this forum and the Admins, I think we should first try to use the Chronic Health Conditions and Support Group located here: http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

If it turns out that group doesn't work to support everyone with diabetes issues, then we have the right to ask again.

I feel it's best to do our part first and try to make do with the existing group.

Thanks.