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Neonatal diabetes

Neonatal diabetes is a form of diabetes that is diagnosed under the age of nine months. It’s a different type of diabetes than the more common Type 1 diabetes as it’s not an autoimmune condition (where the body has destroyed its insulin producing cells).

The key features of neonatal diabetes are:

  • Neonatal diabetes is caused by a change in a gene which affects insulin production. This means that levels of blood glucose (sugar) in the body rise very high.
  • The main feature of neonatal diabetes is being diagnosed with diabetes under the age of 6 months, and this is where it’s different from Type 1, as Type 1 doesn’t affect anyone under 6 months.
  • As well as this, about 20 per cent of people with neonatal diabetes also have some developmental delay (eg muscle weakness, learning difficulties) and epilepsy.
  • Neonatal diabetes is very rare, currently there are less than 100 people diagnosed with it in the UK.
  • There are two types of neonatal diabetes – transient and permanent. As the name suggests, transient neonatal diabetes doesn’t last forever and usually resolves before the age of 12 months. But it usually recurs later on in life, generally during the teenage years. It accounts for 50–60 per cent of all cases. Permanent neonatal diabetes as you might expect, lasts forever and accounts for 40–50 per cent of all cases.
  • Around 50 per cent of people with neonatal diabetes don’t need insulin and can be treated with a tablet called Glibenclamide instead. These people have a change in the KCNJ11 or ABCC8 gene and need higher doses of Glibenclamide than would be used to treat type 2 diabetes. As well as controlling blood glucose levels, Glibenclamide can also improve the symptoms of developmental delay. It’s important to know if you have/your child has neonatal diabetes to make sure you’re/they’re getting the right treatment and advice (eg stopping insulin).
  • Genetic testing for neonatal diabetes is offered free of charge for all people diagnosed with diabetes before 9 months of age. Confirming the diagnosis by molecular genetic testing is essential before considering any change to treatment.
  • More information about neonatal diabetes can be found at www.diabetesgenes.org.

So if you were/your child was diagnosed with diabetes before you/they were 6 months old, ask your diabetes team for a test for neonatal diabetes. Your team can take a blood sample and send it to the Peninsula Medical School based at the Royal Devon and Exeter Hospital for analysis. The test is free. Go to www.diabetesgenes.org. This site will also tell your doctor how to take your blood and send it to the team at Exeter.

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