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Guidance and advice about COVID-19 for sufferers of CSF Leak

Many of our members and community members have raised concerns about the ongoing coronavirus pandemic (COVID-19) and whether or not people with CSF leaks, both cranial and spinal, and those with cerebral shunts, are at an increased risk of catching the virus or having more severe illness if they get the virus.

We have consulted with our Medical Advisory Committee in light of revised government guidance that now advises those at ‘higher risk’ to practice social distancing, and their feedback is included in this statement. The definition of 'higher risk' currently includes being older than 70, having some underlying health conditions and being pregnant.

As of 23 March 2020, only essential travel outside the home for food, health reasons or essential work is now advised in the UK; the vast majority of people have been told to remain in their houses and avoid contact with anyone from outside their immediate home group.

COVID-19 is a novel virus and as such there isn’t a large body of evidence to draw from and this outbreak is an evolving situation. There is currently no clear evidence to suggest that having a CSF leak or a shunt, on their own, puts a person at higher risk. This virus predominantly affects the lungs and, if severe, it is known to cause cardiac issues.

We would, however, urge each of you to carefully consider your overall health status, including your age, smoking status and other separate health conditions you may have (including high blood pressure, heart disease, lung disease, cancer or diabetes) when considering what steps you plan to take to manage your risk of contracting the virus.

Please also be aware that there are a number of health conditions known to co-occur in some people who have or have had a CSF leak e.g. connective tissue disorders, postural tachycardia syndrome (PoTS), mast cell activation syndrome (MCAS) and intracranial idiopathic hypertension (IIH)) and if you are affected by any of these conditions, we would urge you to seek advice from condition-specific organisations who have issued their own statement in relation to COVID-19 or your medical team; you must consider your own health status in the round.

If you have specific concerns about your individual health, speak with your doctor and follow the government or health service-issued guidance relevant to where you are.

Regardless of how stringently each of us chooses to follow the social distancing guidance, we can all do our part by practising good hygiene practices, isolating as and when necessary, keeping in virtual contact with each other and sharing only trustworthy information and advice about COVID-19.

Please also consider your mental health and emotional well-being at this time and don’t forget to take a break from the news from time to time. It is important for us all to keep abreast of current NHS and government guidance, but it is equally important for us to maintain perspective.

The mental health charity, Mind, has some useful information that might help:

Finally, everyone involved with the CSF Leak Association wishes you all the best in these coming months. Disruption to NHS services will no doubt affect many of us as the UK’s four health services mount a response to the outbreak; if we successfully ‘flatten the curve’ this outbreak will still be with us for some time.

Although nobody can predict with any certainty how mild or otherwise their illness will be if they get COVID-19, we know that many people with CSF leaks report that even common colds and flu (particularly with associated coughing) can make their symptoms harder to cope with. If you rely on pain or other regular medication, please make sure that you contact your GP surgery to make sure you have what you need.

Please also don’t be shy about asking your friends or family for help during any period of self-isolation and if you’re in the unfortunate position of being in isolation without your usual support network, there are local support groups springing up all over to help out. We would, however, urge you to exercise caution when dealing with any external organisations that are not formally registered as charities or healthcare providers, as they may not be subject to the same level of scrutiny or regulation.

Here are few links and resources that you may find useful:

If you believe that you may be experiencing symptoms of Covid-19/Coronavirus, you must follow the latest NHS/government guidelines and, amongst other things, self-isolate. If you are not located in the United Kingdom, advice for your country may vary slightly.

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