Dear community, This strain of coronavirus is new, which means the knowledge on how it will affect people living with SMA is still limited. However, this is a rapidly changing field so advice will be updated as more is learned.
We have built a repository of information, where this information will be uploaded.
Leading experts in neuromuscular conditions are working with colleagues across Europe to learn from their experience over recent weeks. They have reached the following conclusion:
All people (children and adults) with a diagnosis of a neuromuscular condition and their carers should consider social distancing at this time. However, those caregivers and family members who live with, or regularly visit, a person living with SMA, should also follow the recommendations outlined below to reduce the chance of bringing COVID-19 infection into the home.
The World Health Organisation recommendations include:
- Wash your hands frequently with soap and water or an alcohol-based hand rub
- Avoid touching your eyes, nose and mouth unless your hands are clean
- Try to keep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing
- When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
- Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.
We also recommend that you check with your national SMA organisation who might have already developed recommendations (these are listed below) for people living with SMA in your country with the help of their medical advisory board:
- Czech Republic
- France: (1) & (2)
- The Netherlands: PBS & VSN
Please understand that we are not medical professionals and therefore unable to give medical advice. We would advise anyone who is concerned or who has questions to consult their physician. If you are concerned about the status of your current participation in clinical trials or about Spinraza™ administration, please contact your study/ administration site. Please stay safe and make sure you and your loved ones are following all recommended precautions.