PKU & IEM Related Information

MDDA will continue to provide updates regarding PKU & IEM related information surrounding COVID-19. However, always consult your metabolic clinic should you have serious health concerns.

Supply – formulas, low protein products and medicines

MDDA understand concerns with ongoing supply of supplements/low protein products/medicines during these uncertain times. Our suppliers have recently updated their statements and will continue to keep us informed should their circumstances change. To ensure and safeguard supply people are requested not to order outside of their usual cycle or stockpile medications/supplements/low protein products. We understand the concerns people hold however there is enough product available for everyone who needs them if we all continue to order our usual supply.

To read the full Supply update statement click here.

Precautions to take for individuals with a ’sick day action plan’

For some rarer IEMs risk of decomposition due to viral infection is high and therefore a sick day action plan is common place.

To read about precautions to take for individuals with a ‘sick day action plan’ in regards to COVID-19 click here.

COVID-19 vaccines and disability 

Regularly updated information is also available on the following Department of Health webpages in regards to:

What do I do if I’ve been asked to self isolate?

If you or other members of your immediate household are asked to self-isolate or present for Coronavirus testing, then: let your metabolic team know (this will help with planning) and do not attend any routine outpatient appointments at the hospital but instead contact your metabolic team to discuss if another form of appointment is needed eg. by telephone or video.

Individuals who are concerned that they have been infected

According to HealthDirect:

If you have severe difficulty breathing, call triple zero (000) immediately and tell the call handler and the paramedics on arrival about your recent travel history and any close contact with an infected person.

You can also use the Symptom Checker to find out if you need to seek medical help.

If the Symptom Checker tells you to seek medical help, it is very important that you call before visiting your doctor or the hospital emergency department, to describe your symptoms and travel history.

We recommend that, if you are advised to head to  hospital with possible COVID-19 symptoms that you immediately call your metabolic clinic using the on call number, making them aware that you are coming on medical advice with suspected symptoms of COVID19. Once you arrive at the Emergency department,  let them know about your IEM and that you have called the metabolic clinic. Have the “on call number” with you to give to emergency staff.

You can also call the Australian Government’s National Coronavirus Helpline on 1800 020 080.