Another Kind of Diabetes: MODY
It takes a complex and not fully understood interplay of genes and environment to bring on type 1 or type 2 diabetes. But in several lesser-known kinds of diabetes—all grouped under the umbrella term maturity-onset diabetes of the young, or MODY—the disease is caused by just a single aberrant gene.
Each type stems from a mutation in a different gene, and collectively MODY accounts for an estimated 1 to 5 percent of all diabetes. The estimate is rough because MODY is often misdiagnosed as type 1 or type 2.
While the immune system misfires in type 1 and insulin resistance characterizes type 2, MODY stems from problems in a set of genes that regulate the body’s flow of insulin. A faulty gene means the pancreas can’t make enough insulin, leading to diabetes.
MODY is highly heritable. If one parent has a gene that causes MODY, there is a 50 percent chance it will be passed to a child. However, not everyone who inherits a MODY gene develops diabetes.
People usually find out they have MODY before the age of 25, often when high blood glucose forces a trip to the doctor or emergency room. However, in some cases, symptoms are so mild that the condition remains hidden until later in life.
If a doctor suspects that someone has MODY, genetic testing can confirm the diagnosis. By pinpointing the mutated gene, a doctor may be able to customize treatment. For example, some MODY subtypes don’t require treatment with insulin and can be controlled with oral medications. Screening is useful since MODY is hereditary; if one person in a family has it, there are likely to be others.
Comments
Comments are subject to review and will not be posted immediately. If you have an urgent medical question, please consult a health care professional. If you have a question for the staff of Diabetes Forecast, please send it to replyall@diabetes.org.MODY
There is genetic testing for MODY,I have 2 girls with MODY-2.My oldest was diagnosed after 3 yrs diagnosed with type 1.She only needed a small amount of an older pork insulin(she is now on Lantus a day)and was way past the honeymoon phase so our knowledgable endocrinologist doctor suggested genetic testing and they both have MODY-2,there are aprox 9 subtypes.Please realize MODY is out there,is in need of care BUT is not as in your definition a"type of type 2 diabetes" it is not it is a monogenic form of diabetes.
Parents need correct information,MODY people do need insulin at times,sometimes insulin is a better choice as it has not long term side effects as do some oral antidiabetic agents,pills may be easier but in the long term what is better? If a person with MODY has to take steroids(predisone,solucortef etc) it can affect them just as a type 1 kid.Sorry for the legnthy ramble,I get frustrated with misinformation at times.
I have a son that was
I have a son that was diagnosed with MODY about 6 months to a year ago ... they told me that he definitely does not have type 2 or 3.. also most likely not one. and that there are now seven forms of it. They told me the testing is to expensive so they are going to have to put off testing until its necessary. he is only on a sliding scale between 2 and 5 of novalog thru out the day..and 5 of lantis at night. but every time we go back they add more. and more. I have been checking up on the other types and they are SCARY.. I feel like it doesnt matter to theese people. about trying to find out what type it is. so i can learn and know what is going on with my 9 year old boy. Its so frustrating. Saidly he also has ADHD and ODD .. And im not sure if somehow they are associated or what is going on....... I feel alone because i live in a really small town and he is the only child with any form of diabetes in his school.
Test Alternative
I'm MODY-3. I was diagnosed as Type 1 at age 6, and went on to take insulin for the next 33 years. I was always a mild type 1 and could control my blood sugar very easily with a low carb diet alone. There was no way I'd been in the "honeymoon" for 33 years and I always tested > 0 on a c-peptide test (c-peptide is a byproduct of insulin production).
The test cost me $5700 and was not covered by insurance. After the diagnoses, I switched from shots with each meal to a small pill with each meal called Prandin (this is normally a type 2 drug that makes your body release insulin in response to glucose which is exactly the thing a MODY-3 needs help with). My best A1C to date is 4.9 which is unbelievably normal. I do, however, still follow a controlled carb diet, and I lift weights every day.
Alternative:
Until you raise the funds or insurance companies start giving genetic testing its due, you could 1) get his C-peptide tested, this will show if he is making insulin. 2) have him tested for the type 1 antibodies. These should both be covered by insurance. If he's making insulin and test neg for antibodies and is not overweight, there is a chance he is MODY.
MODY or not, I recommend reducing carbs as much as possible and get him involved in weight lifting to build as much muscled (yes, I'm talking about bodybuilding) as he possibly can, the more GT4's your son has, the lower his insulin requirements will be.
MODY testing
The Kovler Diabetes Center is doing ongoing research to try and find MODY patients. They are also doing genetic testing at no charge. Myself, my son and my dad are all doing the testing. http://www.kovlerdiabetescenter.org/registry/mody-registry
How did you go about getting
How did you go about getting the free genetic testing through this MODY registry? Did you just sign up and they contacted you? What was the time line like? I was found to have hyperglycemia in the past few months with no Type 1 antibodies and no signs of Type 2, so today my doctor mentioned that we should do the genetic testing for MODY. If it really is free, I want to know more about your experience!
GT4
What is GT4?
mody
Hello, I read your post and was compeled to write you back. I have a daughter and a son with MODY2. I have another daughter who doesnt. The reason I know is since we were fortunate enough to have had them genetically tested. My wife has it as well. Her sister and father claim to have type two, but wont get tested to prove it is MODY as well. My daughter who doesnt have MODY has shown signs of OCD and ADHD. I want to tell you there is hope. I hope this finds you, and you are in the frame of mind to hear my message. Change your diet. Become an expert on the good things to put in your body. Juice,Raw,Organic,Avoid drugs. you can do it! Take baby steps. Every step in the right direction is worth taking. It wont be to long before you will see results. My wife hasnt used an inhailer in 3 years. My son and daughter who have MODY are not even registering on the charts for diabetes anymore. My daughter no longer has OCD,ADHD, and is one of the top in her class. I swear to you this is true. You have only your health and your family's health to gain. Congratulations on your new life.
i just got diagnosed with
i just got diagnosed with mody today. i was used to being called type 2 but i got genetic testing done and have to be put on insulin instead on metphormin now. ):
Me
I have been told for years that I am a mix between type 1and type 2, but I'm mostly on the type 1 side. I take a sliding scale of Nololog to cover my food intake and 27 units of Lantus in the evening. My sugars are horrendous! My BIG problem is that they are a constant roller coaster and no one seems to know what to do with me. Constant UNEXPLAINED highs and lows. It doesn't sound to me like I fall into any of the categories that were mentioned and one comment I saw mentioned that there were 7 different types of Diabetes. WOW!! Are you kidding me?!? That's crazy! I had no idea! Where can I find more information on these other types?
Thanks
I am so tired of doctors not listening to me
I found out that I had elevated blood sugar during routine lab work that my boyfriend (husband now) encouraged me to do. When my A1C came back as 6.2 my doctor said I had Pre-diabetes. What he did not know (this was in 2005) was that a type of diabetes called MODY diabetes was known in my direct family. Since hardly anyone had heard of this type of diabetes I was told the problem came from me eating unhealthfully and not getting enough exercise. At the time I was working in a parts and service dept of a travel center. I was always lifting and carrying heavy objects (truck tires, batteries, starters, etc). In addition I would work out in the fitness center at my apartments. The problem was that I was eating way too much sugar and refined carbohydrates. I refused to take medication at that time because I believed if I ate better then my blood glucose should go down. I also found out that high blood sugar causes you to crave refined carbs heavily because the sugar is actually not getting to any of your cells. If I could keep my blood sugar down I could avoid cravings that make me want to binge on chocolate (of course, getting free fountain drinks and guzzling mt. dew didn't help). I began to watch my sugar intake and only eat refined carbs with a meal rich in protien and fiber to regulate the absorbtion of the sugar into my blood. Eventually, a Phys. Asst. in Florida recommended a glucose intolerance test. I was fasting for over 12 hours when the three hour test was administered. My stomach was completely empty then I drank basically kool-aid (liquid sugar) and sat down in a chair for an hour. Of course my glucose went up in one hour to 237. At two hours it was 217. So any doctor that sees these numbers know that they fall into a catagory: DIABETES. Tell me how a "Glucose tolerance test" moves a person from glucose intolerant to Diabetic. No doctor ever cared when my A1C was always from 5.9-6.3 regardless of medicine or not. Oh, and by the way, Metformin is not the correct medication for MODY diabetes, however it is what the insurace will pay for. The people in my family that carry the MODY gene are as follows: paternal great grandmother, paternal grandmother, paternal aunt, paternal cousin, FATHER! No doctor cared. They just told me I ate too much bad food and didn't get enough exercise.
Post new comment