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Hi Tracy, I find this shocking. That nurse is likely not informed. Speak with other more I formed health professionals. There are many diabetic nurses and even some practicing endocrinologists (those who don’t follow research over the past decade or more) who know very little about MODY or...

Hi Thomas, A person’s HbA1C or sugar levels are not an Differential indicator of MODY vs Type I. MODY can manifest different for different people even if they share the same identical genetic mutation that causes the condition. In all cases though—as far as I know—ones capacity to produce...

Have you gone to emerg!? Have you been seen by a diabetic specialist? I found your post alarming and I hope that you are gaining access to support from people with some expertise. So much of one's access depends upon being an advocate for oneself and/or calling in one's family and friends to...

Hello, I just came across this post from a while back. http://monogenicdiabetes.uchicago.edu/for-healthcare-professionals/neonatal-diabetes/ At uchicago they have a monogenetic diabetes registry. http://monogenicdiabetes.uchicago.edu/ The experts there are very friendly. When I...

Hi! Do you know what type of MODY you are? I gather that the meds you were on were leaving you too low (that is dangerous!). I hope you're being well followed now by someone with some expertise. As a MODY3 person who is on the brink of needing tablets, but doesn't need them yet, I'm happy...

Hello! Do you know which MODY you are? There are many different types, although the most common one is MODY 3 (HNF1A-mutation). Great to hear from you!

Hi Mike! Great to hear from you. Happy to exchange notes. I've sent you a private message. It would be great if there were MODY3 thread/forum for folks like us to connect. So far its been challenging to find others with MODY 3 and your are the first one I've connected with who is also...

Hi Sianygiddz, Hang in there! And thank you for posting. Given your family history of diabetes, and the nurses recommendation, you might want to see if you do have a form of MODY. If you do, your treatment may change. In some cases of MODY 3, people are taken off of insulin and take an oral...

Hi! Was just curious if you had genetic tests done to rule out MODY, or if you were positive for antibodies? I'm not currently on meds so can't help you on that front. All the best! R (Mody 3)

@justadad

@justadad Hi there, Good luck with the tests. Different kinds of MODY manifest differently, and there is also quite a lot of variability within categories of MODY. I'm MODY3 (HNF1A-mutation). If you son ends up positive for MODY, depending upon the type it may well have implications for...

Hi! Yes people can be diagnosed with MODY3 (I'm less familiar with other types) at an older age. Although many are diagnosed in their teens or early 20s, there are also many diagnosed later. And I suspect that there are many who never were diagnosed but who might have been at an older age, as...

Happy Travels! And all the best with the upcoming tests. I'm curious to hear why a suspicion of MODY came up? Happy to hear how things go moving forward. Warmly, R

What a story! So have all of the family members gone ahead to be tested for MODY3? Has their treatment also changed? As I'm sure you know well, any of your siblings have a 50-50 chance of having inherited the same mutation (since one of your parents was a carrier) and the same for any...

ps Here in Canada (I'm not sure if this is the case in each province or territory) if a member of your family has a confirmed MODY diagnosis, then genetic testing for immediate family members is automatically covered by public health care (even though the genetic testing takes place in Chicago!)

That is wonderful that you could make the switch to tabs after so many years of injections! I have wondered if my aunt could do the same, but according to her endocrinologist, she doesn't have any insulin producing capacity remaining. Given that he had not communicated to my aunt the...

Hi, I'm MODY 3 or HNF1A diabetic. My understanding is that there is a lot of variability in terms of when and how severe symptoms show up. This is what I've understood from my reading and from my own observations: - There is a 50-50 chance of inheriting the mutation that causes our form of...

I'm curious to know if you got your MODY3 test result? I figured out I was MODY3 with an OGTT at age 40 and a better understanding of my family's experience with diabetes. I got the genetic confirmation more recently as well. My only symptoms were elevated BS at 2hrs and a prediabetic hbA1C...

I also have a recent MODY3 (HNF1A-diabetic) diagnosis at age 40. Managing without meds at the moment. I wonder how many of us are on this forum?