An Update from the Board of Trustees

With Covid-19 presenting a huge challenge for people across the globe and understandably dominating much of our health services’ resources, we are acutely aware of the significant, and in many cases additional, struggles faced by those of us with ongoing CSF leaks and related health issues. It is a worrying and challenging time for many of us, and for many reasons.

In March, we worked with our Medical Advisory Committee to prepare a statement on Covid-19 and CSF Leaks. There was, and remains, no clear evidence to suggest that having a CSF leak or a shunt, on their own, puts a person at higher risk. However, it is a dynamic situation and there is much still to be learned about the virus, so it remains important to be cautious and maintain social distancing for as long as the Government wherever you are advises it.

What we do know is that those suffering from CSF leaks are likely to find it harder to cope with leak-related symptoms in addition to being ill due to a virus, especially if said virus induces coughing. If you are isolating with Covid-19 symptoms and you find your CSF leak symptoms are worse, please do speak to your medical team about it, so you can access what additional support may be available.

It is also important to note that there are some conditions that may be related to, or are sometimes seen alongside CSF leaks, that could potentially alter the picture for you. Some patient organisations related to these conditions have issued specific guidance and we would urge all who may be affected to consider the guidance and their health situation in the round, and to seek advice and guidance from their medical teams where there is any doubt.

In recent weeks, it has also become clear than many people in our communities with ongoing health conditions have been reluctant to access their usual sources for advice and support. Please, if you need medical support or advice, contact your specialist, GP or dial 111 (as appropriate). It is important that you should access help if you need it, rather than risk worsening your condition. Whilst most CSF leaks are not life threatening, they can be extremely debilitating and distressing and if you need treatment or support, please do ask for it.

Whilst many leakers have become masters of occupying themselves whilst stuck at home, with the advent of Covid-19 our family and friends may have found themselves with more time on their hands and are in need of a way to keep busy or find a new focus. We can help! We offer the opportunity of volunteering options that do not even require you to leave your home – the ultimate in social distancing.

We are looking for volunteers with social media, web design, secretarial, fundraising and volunteer management skills, to name but a few. We would invite anyone who feels able and willing to help in whatever capacity to note their interest with us. We understand, better than most, health-related limitations and competing priorities only too well, so we’re always happy to work with you to find a task that fits with what you are able to offer.

We will be writing again in the not too distant future about volunteering, but in the interim, please do reach out to us, if you can. We’ll also have a small social media campaign coming up for Volunteers’ Week 2020, so please keep an eye out and share the information widely with friends, family and colleagues.

On a positive note, we are also pleased to report that our website passed the landmark of 1 million views since it was first launched in 2016! This is a wonderful achievement and bodes well for our current website redevelopment project, which we hope to complete over the next year. With the limitations of CSF leaks, we recognise that online engagement is fundamental to the work that we do. It is our principal ‘shop window’ and a vital way of helping the CSF Leak community. The existing website has served us well, but it is now showing its age so it is time to move forward.

Lastly, we would like to express our thanks and gratitude to Susan Iacovou, who joined us on the Board in 2019 and, latterly, took on the role of Acting Chair, but who recently stepped down due to ill health. She did a great deal of work on volunteer management, brought energy and enthusiasm, and her involvement on the Board will be missed. We wish her well for the future.

We hope that this edition of Leaker Life provides a useful distraction to lockdown and, remember, if you’d like a slightly longer distraction during lockdown, please contact us to volunteer!

David Baldwin
Acting Secretary
For and on behalf of the Board of Trustees