Although I am a LADA (T1.5) diabetic , I just call myself a T1 to others - it’s just easier that way. Saves getting a million questions! I will explain LADA to people if they seem interested in diabetes, but generally they’re just confused about it all so I leave it out.
What do you do? Do you fill in forms / talk to friends & family etc about being a 1.5 or do you just say T1, if anything?
I don’t because of all the media stories lately using “Type 1.5” to refer to double diabetes instead. It just gets too confusing. So I just say I’m a Type 1 most of the time, unless they want to discuss it in detail.
Double diabetes is a term I’ve never heard of over here (New Zealand). Then again, I haven’t really heard anyone use the term Type 1.5, other than online. I don’t think double diabetes is even recognised as a name - not sure though, I’ve never been in a situation where I’d hear anyone say it. In fact, I’m not even sure that I’ve ever heard anyone use the term LADA either!
It can get confusing being on an international site where we seem to have quite a few things - even insulin names - that are just different enough to confuse us all!
I just call myself a type 1. If anyone questions it (but you werent diagnosed until your 20’s, i thought type 1 was for kids)
If i am talking to someone familiar with the disease, I may elaborate.
I call myself a type 1.5, because I like being unique! I get lots of comments from people who have never heard of it, but it is simple to just tell them it is late onset type 1 in adults. I’ve heard type 1.5 being referred to as double diabetes, too. So I may eventually just say I am type 1. Some surveys don’t give you the option to select type 1.5, so then I select type 1.
I just say Type 1. Many people don’t even know what that means. The average non-diabetic person, I am finding, knows next to nothing about diabetes and may vaguely “know someone” who has or had it (usually a Type 2) and tends to ask questions like “How many shots a day do you give yourself?” and “Can you eat _____?” Or, if they know what Type 1 diabetes is, they look puzzled and say, “But only children get that.” Sometimes, if the person seems curious, I take the time to explain the whole deal to them (the autoimmune process, the fact that I have to give myself a shot literally every time I put something in my mouth, the fact that it’s carbs that raise your blood sugar and a diabetic person does not have to avoid everything that contains sugar), but other times I don’t feel like teaching Diabetes 101. It all depends on my mood.
I don’t mention Type 1.5 or LADA at all. Most people don’t even know that there are different types. For those that know there is a difference I just say “I am Type 1”.
I usually just go with “Insulin dependent” if it’s just a normal person on the street asking, that usually stops the line of questioning.
I just consider myself type 1, since my chart and my letter to fly with my stuff say type 1. I really haven’t told anyone about being diabetic, but when I wrote it on my chart at my annual eye exam I received a strange comment from the technician. He said, “you don’t look fat, did you lose a lot of weight?” Honestly, wasn’t quite sure how to respond then, but I sure have a few things would say today!
Ditto on all fronts. Sometimes when I’m obsessing (in a positive way) about diabetes, I’m willing to teach D-101. But I’m struggling emotionally with it, then I tend to hide and minimize conversation about it.
So true that many don’t know what it means.
I say T1, but as a chatty Cathy this usually leads to a more detailed description of my woes!
Most people have no idea of what we have to freakin’ do… and I am happy for them… (not beig sarcastic… sincere)
I gave up too. I say I have a odd form of Type 1 and that my pancreas is about to give out. I usually don’t get anymore questions after that. It might not be 100% accurate, but it resolves the issue.
I say I have Type 1 diabetes. I had rapid-onset Type 1 at age 35 (along with Hashimoto’s disease, another autoimmune disease that is linked to Type 1), and I am very insulin-sensitive (quite the opposite of insulin resistant). It is just a myth that Type 1 diabetes is a childhood disease. I personally think it works against us to say we have Type 1.5 or LADA. A new book, “Type 1 Diabetes in Adults: Principles and Practice” (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27). Those of us diagnosed as adults represent the vast majority of Type 1’s. The Expert Committee on the Diagnosis and Classification of Diabetes Mellitus doesn’t recognize Type 1.5 or LADA; the Expert Committee says, “Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”
I tell people I am Type 1.5/LADA. I want everyone to be aware the we are here!!! I explain and tell them to look it up on the net. My endo said I should just say type 1 to regular dr’s. HE said it confuses them.
Yes I agree that’s probably why so many of us are misdiagnosed. I was diagnosed at 38… of course as T2 and my PCP even said I was insulin resistant since I still made insulin…My Endo agreed, I do make insulin, just not enough which is often the case with adults with T1. He has not yet used the term T1.5 or LADA ; he writes “T1 insulin deficient” on my forms for diagnosis. My CDE did mention she thought T1.5 is what I have and said her boss recently (Jan or Feb) attended a seminar where T1.5 was being discussed. It seems like it is just now becoming a term in the main stream medical community. With that said… I also just tell people I am T1. If they seem to grasp that concept I may continue to ramble on about T1.5 … especially among family.
The scary part is that most people go to their PCP first so it seems that’s where most of the education needs to start. They need to recognize the symptoms and order the proper tests…or just send you to an endo early on.
I also usually say type 1.
Interestingly, the internal medicine doctor at the emergency room diagnosed me as type 1.5 at the age of 21. My endo corrected him and said that type 1.5 doesn’t exist-- it’s just late onset type 1.
I also had rapid onset (definitely less than 9 months, from normal fasting BG level to over 600). So I don’t even know if I should be called LADA or type 1??
Generally I say type 1 since most of the people can’t get the two main types straight. However, most of the doctors I speak to and work with believe (and so do I) that LADA is simply type 1 that progresses more slowly than traditional type 1s. So you aren’t lying when you say you are a type 1.
A lot of the confusion may stem from the insurance companies too. I was originally diagnosed as T2–age 34, relatively thin, no family hx of diabetes. After my referral to an endo, he said T1.5. Because the medical community cannot agree on type 1.5, the insurance companies do not recognize type 1.5. Thus, for insurance companies, I am type 2 until I am totally insulin dependent.
To others, I typically say type 1.5. Yes, a brief explanation usually follows. Perhaps we can help spread the word…
lol…I was dx w/ type 1.5 at 22 finally someone my age w/ LADA.
I apoligize for my ignorance. I have been a type 1 diabetic for 20 years. I tried to reverse in the blog to see what LADA refers to, but no such luck. What does the acronym stand for?