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MPS and Coronavirus UPDATE for Families

Sunday 22, Mar 2020

MPS and Coronavirus (COVID-19)

 

Advice for Parents, Carers, and Patients

 

What you need to know about coronavirus

Coronavirus (COVID-19) was first reported in December 2019 in Wuhan City in China. It has since spread across the world and significantly impacted Australia. 

To help stop the virus spreading everyone should practice good hygiene including washing your hands regularly, coughing and sneezing so that it is into your elbow or a tissue (which must be discarded). The idea is to avoid covering with your hand which may then touch others or surfaces, and avoiding close contact with others. People are strongly encouraged to participate in social distancing behaviours to help minimise the spread of the virus.

We encourage people to check the Department of Health’s Coronavirus Information Page for the latest updates. The most up to date information about the outbreak, including information for returning travellers can be found smart travellers website. https://www.smartraveller.gov.au/news-and-updates/coronavirus-covid-19     

Please note this is a practical guide only – please ask your own specialist MPS team if you have any questions or concerns about your situation.  

People with MPS should be aware that, just like with the flu, they may be at a higher risk of severe symptoms and complications from coronavirus.  In some cases people with inherited metabolic disease are at risk of worsening of their metabolic condition if they develop a viral infection.

There are specific groups of patients who may be more at risk of complications from COVID -19 because of a second condition or complications of their disease. These include:

  • People with chronic lung or heart disease
  • People with diabetes

In addition, those taking specific immunosuppressant medication eg: following a transplant.

Practical steps you can take:

  • Check any medications or supplements that you keep at home are in date (not expired for use)
  • Keep a copy of your written emergency guidelines handy to show any health professionals

Have your clinical teams numbers handy discuss options for telehealth/skype etc appointments rather then go to the hospital for all appointments that don't require a specific test (eg cardiac echo).

 

  • Keep at least 2 weeks of medication at home if practical
  • Remind support workers to follow a strict hygiene routine before and after shift

Self-Isolation

  • If you are required to self isolate or present for testing let your metabolic team know. 
  • Ask if any appointments can be provided via telehealth/skype etc 

 

  • Stay in touch with family and friends and give yourself a “holiday” from news and social media every now and again.

ERT 

If you have any concerns about accessing your hospital for ERT please call you metabolic nurse to discuss.

Please be assured that the Metabolic clinic teams are contactable if you have any questions or concerns. Metabolic clinics may be operating differently for a period of time but we have been advised that there are no concerns with ongoing access to ERT and patients will continue being treated accordingly. 

 

This information was reviewed by our Metabolic clinical experts, March 20th 2020