COVID-19 and Fabry Disease with the Fabry Disease Medical Advisory Committee Webinar
Right now, we are all learning to adapt to a new ‘normal’ in what is a unique and challenging time. There are many unknowns, which is something we as Fabry patients have learned to ‘adapt’ to, nevertheless, it is quite unsettling. Fabry Australia hosted its first member webinar ‘COVID-19 and Fabry Disease with the Fabry Disease Medical Advisory Committee’ on Wednesday 15th of April. Thank you to all of you who dialled into the call and thank you to our Medical Advisory Committee who made themselves available to answer many questions that we received in advance and on the night. If you missed the webinar, you can view it by requesting the link from Fabry Australia at firstname.lastname@example.org
The purpose of the webinar was to;
1. Allow opportunity for the Fabry patient community to ask questions or raise any comments or concers in relation to COVID-19.
2. Hear directly from the Medical Advisory Committee of Fabry Australia
3. Enable opportunity to seek current information that is relevant to them locally (Australia). 4. Listen to some helpful tips/ advice to support.
Mental Health – look after yourself.
Heightened anxiety levels is natural at the moment and a certain amount is ok, but there are ways to help distract our minds and tips that may prove helpful;
1. Try limiting news checks (1-2 times a day)
2. Disrupt your worrying thoughts by noticing 5 things you can see, 4 things you can hear, 3 things you can feel, 2 things you can see and 1 thing you can taste.
3. Stay active
4. Plan small tasks for today / tomorrow.
5. Focus on your breathing - 'mindfullness'
6. Talk to your family and friends
7. Encourage and support others
8. Practice gratitude daily. Focusing on some positives
Head to Health - The Australian Department of Health has launched head to health - helpful tool to check out.
National Coronavirus Health Information Line – 1800 020 080 (open 24/7)
COVID-19 Fabry Emergency Plan / Kit
Fabry Australia recommends preparing a COVID-19 Fabry Emergency Kit in advance. In it include items such as;
* Current letter from your Fabry Clinic – outlines what is Fabry disease and how it manifests in you/the patient you care for. If you cannot locate it, contact your Fabry Dr for a copy.
* List all current medications including Fabry disease treatment/s and any other health conditions/ medications.
* List all primary doctors – names and contacts of each including your Fabry Doctor.
* Spare mobile charger.
If there is more than one person diagnosed with Fabry disease in the household – prepare a kit for each person and keep somewhere safe to grab quickly in an emergency situation.
Some of the Questions that were raised during the webinar and their responses were;
Should I continue getting my Enzyme Replacement Therapy in hospital during the pandemic?
If the Fabry Doctor is happy for you to do so, YES, or where possible, it is best to consider having ERT at home. The home infusion programs have capacity to take on more Fabry patients now. If you would rather have infusion at home, please ask your Fabry Clinic to organise for you.
Is it safe to come to hospital to collect my medication?
YES. Some hospitals have ways in which it can be collected through a ‘drive through point’. If unsure, reach out to your Fabry clinic and double check.
Should I stay home during the pandemic?
YES. Only leave to do essential things such as food shop, collect medicine, exercise as outlined by the advice of your State/Territory health website.
Should I get the flu shot right now?
Is it safe to have home infusions at the moment?
YES. Each of the home infusion nurse agencies are operating in accordance to their health and safety regulations to ensure they don’t pass anything onto the patients and likewise, patients will be contacted ahead of time to ensure they don’t present with symptoms which could possibly be COVID-19. If unsure, contact your home infusion program nurse to seek further information.
What if I need to do a test for my Fabry disease right now?
Most of the Fabry Clinics have suspended any unnecessary tests to manage your Fabry disease. Appointments may still go ahead via tele-health or shifted to a new date. The LSDP has extended its date for receiving test results from 1st of May to 1st of November. This allows more time for tests to occur as needed. Any concerns, please reach out to your Fabry Clinic.
If I do get COVID-19, should I call my Fabry Clinic?
YES, All the Fabry Clinics and Fabry Doctors want to hear from you if you are diagnosed with COVID-19 immediately.
If I get COVID-19, should I stop my treatment for Fabry Disease?
This will depend on the symptoms being experienced for each individual. It is important that the health team looking after your COVID-19 communicates directly with your Fabry Doctor to decide what medicines / treatments need to be performed or rested whilst experiencing any symptoms from a diagnosis of COVID-19.
Can I use Hydroxychloroquine to treat COVID-19?
The Fabry Australia Medical Advisory Committee recommend that any person diagnosed with Fabry disease who receives a positive test result for COVID-19, to not take or commence a clinical study using the drug ‘Hydroxychloroquine’. If you are diagnosed with COVID-19, please ensure you contact your Fabry Doctor immediately.
The Australian Department of Health app at health.gov.au also states the following in relation to the use of particular treatments for COVID-19 including 'hydroxychloroquine';
“Treating COVID-19 There is no treatment for COVID-19. Medical care can treat most of the symptoms. Antibiotics do not work on viruses. Some reports suggest certain drugs, including ‘hydroxychloroquine, can be used to treat COVID-19. No drugs have been approved by the Therapeutic Goods Administration (TGA) for treating COVID-19.”
To receive a copy of the slides please contact the office via email at email@example.com