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Less common diabetes

MODY (maturity onset diabetes of the young)

MODY is diabetes caused by a change in a single gene, inherited through a family. It often appears in two or more generations, and a genetic test is what confirms it.

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Understanding the condition

MODY, or maturity onset diabetes of the young, is diabetes caused by a change in one single gene. Doctors also call this monogenic diabetes. It is not caused by body weight or lifestyle.2 The gene change is dominantly inherited, so a parent who carries it has a one in two chance of passing it to each child, which is why diabetes often runs through two or more generations of the same family.1 It usually appears before the age of 25.2 MODY is uncommon: Australian research puts monogenic diabetes at about one in 280 people with diagnosed diabetes.5

MODY is usually labelled as type 1 or type 2 diabetes first, and most people are misdiagnosed to begin with.1 The clues that something else is going on are a diagnosis under about 35 years of age, none of the usual features of insulin resistance, islet autoantibody tests that come back negative, insulin that is still being made years after diagnosis, and a strong family history of diabetes.3,4 Sorting out the label matters, because it can change the treatment, and it tells the rest of the family that testing is worth discussing.1

MODY is confirmed by a genetic test. In Australia, people with suspected MODY are referred to an endocrinologist to be assessed and for testing to be considered, usually alongside blood tests for islet autoantibodies and C-peptide.1,3 Treatment then follows the gene. Glucokinase MODY generally needs no treatment at all. HNF1A and HNF4A MODY respond to small doses of a sulfonylurea tablet, often better than to insulin. HNF1B MODY usually needs insulin and can also affect the kidneys.1,4

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MODY (maturity onset diabetes of the young)

What to look out for, and how we help

Symptoms are a guide, not a diagnosis. Your GP confirms the diagnosis; our team helps you manage it day to day.

What you might notice

  • Glucose that is only mildly raised, often found on a routine blood test or in pregnancy, with few symptoms or none at all.
  • Thirst, passing urine more often and tiredness, coming on slowly rather than over days.
  • Diabetes diagnosed in your teens or twenties in someone who is not overweight.
  • A parent living with diabetes, and often a grandparent, aunt or uncle as well.
  • A diagnosis of type 1 diabetes that never behaved like type 1: very low insulin doses years on, insulin still being made, and negative antibody tests.
  • Call 000 for an ambulance when high glucose comes with vomiting, abdominal pain, rapid weight loss, fast breathing, drowsiness or breath that smells of acetone. These are signs of diabetic ketoacidosis, which is a medical emergency.

How our team helps

  • An appointment with a Credentialled Diabetes Educator to work through what your result means day to day, and to help you prepare the questions to take back to your GP or specialist, including whether relatives should be offered testing.
  • Continuous glucose monitoring starts and troubleshooting, so you and your doctor can see the real pattern instead of guessing from occasional finger pricks.
  • Insulin starts and adjustment within the plan your GP or specialist has set, if insulin turns out to be the right treatment for your gene subtype.
  • An Accredited Practising Dietitian appointment to build an eating pattern around your treatment, rather than a generic diabetes diet.
  • Pharmacist medication support, including how a low dose sulfonylurea works, how to spot a low glucose level and what to do about it.
  • ESSA accredited exercise physiology, and telehealth appointments across every discipline, so you can keep the same team if you live outside Perth or move away.

Your PDC care team

The teams and services that most often support people with this condition. They work from one shared plan, and one GP referral reaches all of them.

Allied health teams

Diabetes Education
Diabetes Education
Allied health team
Diabetes Education
Expert guidance from Credentialled Diabetes Educators for all types of diabetes including Type 1 diabetes, Type 2 diabetes, gestational diabetes, and all diabetes technology.
Read more

Dietitian
Dietitian
Allied health team
Dietitian
Personalised nutrition advice from Accredited Practising Dietitians to help manage blood glucose levels, weight management and overall nutritional health.
Read more

Exercise Physiology
Exercise Physiology
Allied health team
Exercise Physiology
Safe, effective exercise programs designed by Accredited Exercise Physiologists for chronic condition management.
Read more

Pharmacy
Pharmacy
Allied health team
Pharmacy
On-site pharmacy services providing expert medication management, diabetes supplies, and health consultations.
Read more

Related services

Related conditions

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Sources and clinical review

This page follows Australian guidance from the RACGP Genomics in general practice resource and Diabetes WA, with international guidance from Diabetes UK and the International Society for Pediatric and Adolescent Diabetes used for the gene by gene treatment detail, because Australian consumer information on monogenic diabetes is limited.

  1. Diabetes UK. MODY (maturity onset diabetes of the young), undated. https://www.diabetes.org.uk/about-diabetes/other-types-of-diabetes/mody
  2. Diabetes WA. The other diabetes. 2024, updated 2025. https://diabeteswa.com.au/the-other-diabetes
  3. Royal Australian College of General Practitioners. Genomics in general practice: disease specific topics, diabetes. 2023. https://www.racgp.org.au/clinical-resources/clinical-guidelines/key-racgp-guidelines/view-all-racgp-guidelines/genomics-in-general-practice/disease-specific-topics/diabetes
  4. Hattersley AT, Greeley SAW, Polak M, et al. ISPAD Clinical Practice Consensus Guidelines 2018: the diagnosis and management of monogenic diabetes in children and adolescents. Pediatric Diabetes 2018. https://www.ispad.org/asset/770BEA19-25E7-429F-B2459F54CE9F873E
  5. Davis TME, Makepeace AE, Ellard S, et al. The prevalence of monogenic diabetes in Australia: the Fremantle Diabetes Study Phase II. Medical Journal of Australia 2017. https://www.mja.com.au/journal/2017/207/8/prevalence-monogenic-diabetes-australia-fremantle-diabetes-study-phase-ii
  6. Healthdirect Australia. Diabetic ketoacidosis. 2024. https://www.healthdirect.gov.au/diabetic-ketoacidosis
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Common questions

Is MODY the same as type 1 or type 2 diabetes?
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No. MODY is a separate form of diabetes caused by a change in a single gene, and it behaves differently from both type 1 and type 2 diabetes. Most people are given a type 1 or type 2 label first, because MODY is uncommon and the early picture can look similar. The difference matters because the right treatment depends on which gene is involved.

How do I get tested for MODY?
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Start with your GP. If the picture fits, the usual next step in Australia is a referral to an endocrinologist, who assesses you and arranges genetic testing if it is warranted. Blood tests for islet autoantibodies and C-peptide are often done first, because they help work out whether type 1 diabetes has been ruled out. PDC clinicians do not order genetic tests or diagnose, but we can help you gather the glucose information and family history your doctor will want.

Will my children have it too?
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MODY is dominantly inherited, so each child of a parent who carries the gene change has a one in two chance of inheriting it. That is a reason to talk with your doctor about whether relatives should be offered testing. Once the gene change is known in one family member, testing other family members is more straightforward.

Do I need insulin if I have MODY?
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It depends on the gene. HNF1A and HNF4A MODY usually respond well to small doses of a sulfonylurea tablet, and people are sometimes able to come off insulin they never needed. Glucokinase MODY generally needs no treatment, while HNF1B MODY usually does need insulin. Any change to your medicines is decided by your GP or specialist, not by us.

Can MODY still cause diabetes complications?
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Yes, for most subtypes. Diabetes UK notes that all forms of MODY except glucokinase MODY carry a risk of the long term complications of diabetes, so eye, kidney, foot and cardiovascular checks still matter. Glucokinase MODY is the exception, with mild and stable glucose levels and complications not usually seen. Your GP or specialist will set the schedule for your checks.

Not sure where to start?

Tell us what is going on and we will point you to the right discipline, or to more than one. Most people start with a single appointment and leave with a plan the rest of the team can see.

Or go straight to a service

Phone (08) 6110 0570 · Medicare, NDIS, DVA and private options across our services

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