The news about COVID-19 can be extra stressful for anyone with a family member with Angelman Syndrome, related disorders or any condition, which brings an additional level of medical vulnerability.
Parents and caregivers have been asking questions about how people with Angelman Syndrome and related disorders might be affected and what they can do to mitigate risk.
FAST has spent time this week, discussing the issue with various medical professionals in our Australian community and we will update this page as new information and recommendations emerge.
What are the symptoms? COVID-19 disease is generally characterized by mild symptoms including fever, fatigue, dry cough. It is caused by a virus that has been named SARS-CoV-2. Illness can be more severe for some people and can lead to shortness of breath, pneumonia or breathing difficulties. Typically, symptoms develop 5 to 14 days after exposure. Other symptoms include loss of appetite and muscle pains.
Does it vary between people affected? Symptoms do vary and some people that have been diagnosed report to have not felt very ill at all.
Would people with AS be at risk of being more severely affected? Angelman syndrome alone does not equate to greater risk of being infected as there is no evidence that the immune system is compromised in any way, however those who have cardiovascular issues, severe respiratory conditions or another compromised health conditions are at a greater risk for complications.
Is age likely to make a difference when it comes to people with AS – are children likely to be less affected? To date, it appears that the virus is more dangerous in an older population however this does not rule out the need to take necessary precautions to prevent infection and spread. Please contact the COVID-19 Helpline numbers in your state.
What should we look out for as early signs that our individual with AS may be affected? Runny nose, cough (for those who can cough well) and fever are the easiest symptoms to detect in our non-verbal population. Other symptoms include decreased appetite, fatigue, decreased activity. Headache is another symptom that may be difficult to identify. If you are concerned, monitoring and recording temperature at home in the first instance is a good idea. The World Health Organisation (WHO) previously suggested not using Nurofen (Ibuprofen) to manage symptoms, this now appears to be incorrect.
When should we visit a doctor or hospital? If available, you may like to call a home visit doctor to remain in isolation and not risk further infection prior to visiting a clinic or hospital and seek advice. Be prepared with your temperature recordings and notes of symptoms you have observed. Take note when paracetamol is given. If symptoms are ongoing, things are getting worse and cannot be controlled with simple measures (e.g. rest, pain/fever relief medication, fluids) then it is advisable to go to hospital/Doctor. Ring in advance to advise ED/Clinic of your plan.
What steps should we be taking now to prepare for possible quarantine or illness? Thankfully, almost everything can be delivered to our doorstep in 2020. Raise the question with your local pharmacy about medicine deliveries or see if you can prepare to have an unaffected friend collect scripts for you on your behalf. Woolworths, Coles and IGA are now offering special shopping times for those shopping with someone with a disability (check your local stores) and as food deliveries are becoming overwhelmed Woolworths are looking at prioritising services for those who are vulnerable, you can apply to be considered in this category here.
Should we keep them at home now and limit contact with people outside of family? Avoiding large gatherings or “social distancing” is emerging as the best defence against COVID-19, however only people who have traveled to high-risk countries and people who have been in contact with a known case have been asked to self-isolate.
The most vulnerable for severe disease are older family members and given that children with Angelman syndrome may find it difficult to stay socially distant from older family members it may be worth considering not visiting elderly relatives in the immediate future.
Currently there is no recommendation for schools to close and the stance from the Education Departments in each state are that children are required to attend school. We advise discussing your unique situation with your school principal.
As a parent should I be taking extra precautions to reduce the risk to my individual with AS? Individuals with Angelman syndrome are overly social and like physical connection and this could make social distancing and limiting touching their face difficult, this is why self-isolation is likely to be the most effective management strategy here.
Is there an increased risk of seizures if my child is affected?
Individuals who have poor seizure control may be more susceptible with a fever or if unwell. If you have rescue meds this might be an opportunity to check that they are still within their expiry dates and revisit your seizure management plan with your GP or Neurologist if you have any concerns.
Should/can I adjust my child’s current seizure medication to boost their threshold? Increases in seizure medication should only be done under consultation with your GP.
How long will this risk be around – is there any point in staying home now, or should we be thinking long term? It is likely everyone will experience COVID-19 at some stage, some are likely to get repeated infections (although less severe as people develop immune responses). it is important to aim to protect the vulnerable populations (i.e. elderly and those with serious respiratory and cardiac medical conditions) in the short term. By limiting spread and staggering exposure there will be less of a burden on the health care system, which can then devote resources to the infected vulnerable.
It is likely a vaccine will emerge, which in the short term will probably be prioritised to the vulnerable population. Vaccination will likely not prevent infection, only reduce symptom severity, duration of illness, and hence further spread.
Is there anything else I can do now to help reduce the chances of exposure or the severity of symptoms if exposed? Following infection control practices advocated by health authorities such as good hand washing, and consider wearing a mask if sick and in public,
There is no known medication or supplement that can prevent or lessen the disease at this time, however a good quality whole food diet can help our bodies overall to stay healthy.
You could consider getting the seasonal flu vaccination; it won’t stop COVID-19 but will help prevent further illness. Talk to your GP if you have any questions. In Australia, influenza on average causes an estimated 3,500 deaths per year.
FAST hopes these answers are helpful to anyone caring for someone with Angelman Syndrome. If you have any further questions that you would liked answered, please contact FAST and we will endeavour to try an seek an answer for you.
*The content of this email and/or content on FAST’s website is only for informational purposes, not medical advice or a guarantee of outcome and is not intended to be a substitute for independent professional medical judgment, advice, diagnosis or treatment. Information is gathered and shared from reputable sources; however, FAST is not responsible for errors or omissions in reporting or explanation. FAST gives no assurance or warranty regarding the accuracy, timeliness or applicability of the content.