In a recent Australian study, as reported in the Australian Associated Press (April 23, 2009) one third of all respondents with Type 1 diabetes indicated that they had initially been misdiagnosed as having Type 2 diabetes. The Founder and President of The Type 1 Diabetes Network in Australia, Kate Gilbert, says, “Healthcare professionals need to consider Type 1 diabetes when adults present with relevant symptoms rather than dismiss the possibility due to the patient’s age. The myth of juvenile diabetes means adults are being misdiagnosed and put in unnecessary danger. Australia has a forgotten group of Type 1 diabetics, those who are first diagnosed as adults and often receive little support or given support that is geared towards children and don’t necessarily fit their needs.”
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?
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…
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?
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.
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.
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.
I you know from personal experience that adults with type one diabetes (adult onset) are not very well supported. I would dread the days with endo appointments, it was always like I should have had superb control. I was diagnosed type one back in june of “09” and felt very alone now dont get me wrong I was not looking for sympathy but just some understanding of what I was going through. Many many times just wanted to give up on the insulin treatment, I fluctuate high low all day and then it levels out to just low in the evenings. And when I would tell the endo that this was happening it was just a look like “you dont have this undercontrol yet?” coming from a person who has never had this, never had to give themselves shots to sustain life, or prick there finger ever hour. Its all very irritating to me.
I find that my family just dont get it or dont even try. I was not missed diagnosed, by correctly diagnosed at 36yrs of age recently and becasee my parents dont have to care for me (not a child) and understand back the front, thats where it stays. My husband goes away often and I have 3 small children, and do you think they would think to call in the morning to see if I was awake??? Never. I have tried to explain to them numerous times but becasue I have lost a bit of weight and have colour back into my face after a few months of feeling ill - they constantly say " you look so good" - I find diabetes so tiring - like breast feeding - always watching the clock or being reminded to take BGL by pump etc… the novalty quickly wore off.
I was told I was type 2 by an endocrinologist even with a positive GAD!! Doctors DO NOT know it all.