We need more awareness of adult onset Type 1 diabetes (LADA)! See Australia's example

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Permalink Reply by Carol Coombes on May 11, 2009 at 7:48am

I hear ya on all of that. The Canadian Diabetes Association is the same way. And the JDRF is geared only for kids. So where do we late onset type ones go? Maybe we should start our own and we can set it up anyway we want for OUR needs.

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Permalink Reply by Melitta on May 11, 2009 at 12:33pm

Hi Carol: I have pondered your suggestion! It's a tough one. People feel sorry for kids with Type 1, but if you are an adult with Type 1, you are on your own. The American Diabetes Association (ADA) put together a position paper on how to treat KIDS with Type 2, but there is no ADA position paper for how to treat new onset Type 1 adults (and I have asked ADA why not, since adult Type 1s FAR outnumber kid Type 2s, but ADA didn't respond). In my local area, JDRF now sends out a support team to new onset adult Type 1s who are in the hospital, which is progress. Sad thing is, most adult onset Type 1s are misdiagnosed as having Type 2, so JDRF wouldn't be informed of someone in need.

I just think we need to make more noise, but how and how can we be effective?

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Permalink Reply by Joe Dennis on May 16, 2009 at 10:49am

When I was first Dx with diabetes my GP told me that only kids could get T1 and adults get T2 . It took almost a year for me to get her to get me a GAD test that showed I was T1. So the Myth is still with in the medical community.We got are work cut out for us.....

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Permalink Reply by Zoe on June 2, 2009 at 7:11am

I would think if someone wanted to seriously make an impact the key would be getting support of someone in a position of power in the ADA or perhaps one or more endocrinologists who would put out some kind of position paper. Also (and I have no clue how this is done) a PSA, a Public Service Announcement, or several PSA's in the media with a campaign to the effect of "Not all Type 1's are children." with contact websites and phone numbers for more information. This would serve to educate the public that when they are diagnosed they need to ask questions. Any media types out there in TuDiabetes land?

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Permalink Reply by Susi on June 7, 2009 at 12:15pm

There's quite an awareness campaign here in Australia. Kate Gilbert also runs 2 diabetes forums on the Type One Diabetes Network - one for young adults with Type 1 (I'm in my 50s and accepted there along with other Type 1.5s), and one for the parents of children with Type 1. I participated in that study - a questionnaire.

Both sites are hugely successful and in the adult site, everyone would know about T1.5. She is responsible for a Starter Kit that is incredibly helpful when you're first diagnosed. I think about 20 Diabetes Educators signed off on it.

We've had a few TV interviews with Type 1.5s and every doctor I've talked to, knows about it. Not that it helped when they missed testing me, but that's another story and I understand why they missed it. But the awareness in the medical profession of adults who should be tested for T1.5 is growing all the time here. I am very happy that awareness of T1.5 is growing here, as it should in other places.

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Permalink Reply by Melitta on June 7, 2009 at 5:54pm

Oh, I wish Kate Gilbert would contact her colleagues here in the U.S.A., and Canada, and get them clued in! You are lucky that in Australia you have such a great advocate.

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Permalink Reply by Susi on June 7, 2009 at 8:53pm

Hi Melitta. Kate is one of many working to further the cause of diabetes in general here. While we can't yet purchase some of the great D-equipment you have in the USA (One Touch Meters, Dexcom etc - not available here yet), and while the UK is somewhat ahead of us medically (I'm told) in some ways, I think we're doing a great job here. We are still battling the lower-carb issue, but we also have advocates for that and things are slowly changing.

The issue of T1 and T1.5 is sadly a fact of life everywhere. I was shocked that statistics say up to 20% of T2s are actually misdiagnosed. But put into perspective - when I was diagnosed 30 years ago, LADA was unknown. When first discovered, I think they even called it "Antibody positive Type 2", until it was better understood. But it's still a separate condition to Adult onset T1 or what was known as juvenile diabetes.

From discovery to mainstream often takes a long time. Take for example helicobacter pylori. Look at the timeline!

It's just one of a gazillion examples of how long it takes for something to be accepted.

It goes without saying that if someone doesn't present as a typical T2, they should be tested, but even T2s who look typical/classic probably should be tested! Then again even some T1s are not antibody positive when tested. My feeling is that it doesn't mean that they weren't antibody positive at some point. Testing will eventually become routine. And by then they'll have identified quite a few more varieties of diabetes. Too many are still being dumped into the T2 basket and are marginalised when they become insulin dependent very quickly - as if their lifestyle is responsible.

That's another issue - there are plenty of people with an unhealthy lifestyle who are overweight and they never get T2.

The work of people like Kate and also some well-known people in the UK (don't know much about this in the USA) is slowly filtering through to international circles, thanks to the internet and international symposiums and such. It takes time and opportunity.

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