General advice for patients with a rare or undiagnosed disorder

It has become clear over the last week that increasing numbers of patients, parents and carers of patients are looking for advice on how to manage concerns about the risks associated with COVID-19. This information can be used to communicate directly with your family, carers surrounding you or your child, or colleagues.

Coronavirus can cause severe lower respiratory tract infection in some individuals especially the elderly and those with pre- existing disorders. In general, children appear to be more mildly affected than adults but anyone with a genetic disorder that compromises their swallowing or breathing or who suffers from frequent respiratory infections or has previously been hospitalized for respiratory problems may be at higher risk. There are as yet very few data about infection rate in children. Overall the death rate is much lower than in older people. The literature on SARS-CoV-2 is in its infancy and there is very little specifically on the risks to children with pre-existing conditions, or complex needs. If you are interested in the literature, we have explained some of the relevant articles here.

Please see the WellChild website for a clear 10-point plan and information specifically for parents and carers of medically complex children. This includes a helpful link to a poster to put on your front door to advise visitors to your home of the precautions they need to take.

We hope you all remain well, we know you will all be doing your best for you, your family and carers involved in care of you or your child. We hope this information helps to achieve this.

Kind regards,

The Team of Movement Disorders Groningen