Q: What is neonatal diabetes?
Neonatal diabetes is a form of diabetes that is diagnosed under the age of six 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 it’s insulin producing cells).
Q: What causes neonatal diabetes?
Neonatal diabetes is caused by a change in a gene which affects insulin production. This means that level of blood glucose (sugar) in the body rise very high.
Q: What are the features of neonatal diabetes?
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% of people with neonatal diabetes also have some developmental delay (eg muscle weakness, learning difficulties) and epilepsy.
Q: How common is neonatal diabetes?
Neonatal diabetes is very rare, currently there are less than 100 people diagnosed with it in the UK.
Q: Are there different types of neonatal diabetes?
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% of all cases.
Permanent neonatal diabetes as you might expect, lasts forever and accounts for 40-50% of all cases.
Q: How is neonatal diabetes treated?
Most people with neonatal diabetes don’t need insulin and can be treated with a tablet called Glibenclamide instead. Glibenclamide is a drug that is more commonly used to treat Type 2 diabetes, though to treat neonatal diabetes you need much higher doses than you would for Type 2. As well as controlling blood glucose levels, Glibenclamide can also improve the symptoms of developmental delay.
Q: What should I do if I think I’ve got/my child’s got neonatal diabetes?
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). 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.
Q: Where can I go for more information?
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.
Kennedy E (2010). Typing errors. Diabetes Update. Spring p27-30.