Easter Update from Facial Palsy UK

April 10, 2020

These are very difficult times for all of us and we wanted to make sure you knew that we are still here if you need to contact us for support or information. We recently emailed our update about the crisis, if you missed this it can be read here – Coronavirus update. Also, a huge thank you to those of you who are key workers keeping our countries going, caring for the vulnerable and saving lives during this time of crisis. We cannot thank you enough.

We have several new members of our community and many are newly diagnosed in what is already a distressing time. If you are newly diagnosed please make sure you look at the self-help videos on our website which have lots of useful information. Please contact us if you have additional concerns. To all of our community, if you are struggling to get medication or eye drops, or have any other worries, then do get in touch. We may not always be able to help but we will endeavour to find someone who can. Even if you just want to say hello because you are strugging with the isolation, we will respond to your email.

Support

Many people are having to adapt to using video meeting software to enable them to work or to keep in touch with family and friends. Anna who has had facial palsy for over 20 years wrote this piece about how she adapted to using virtual meeting technology.

Link to facial difference and virtual meeting technology article

Our book ‘When Teddy Lost His Smile’ is now freely available as an e-book. We can’t post printed books out at the moment and wanted to ensure we still support children and families as much as we can. The ending has been changed to suit an e-book (previously it used stickers). You can read it via the link below. Children who already have the book might enjoy the new ending! We hope to get this version printed and placed in libraries in the future.

Link to children’s e-book

Face-to-face support groups are not currently running. As mentioned previously, many companies and charities are now using video meeting software like Zoom. For some people who have always avoided this it is not the most welcoming of prospects! However, many people find it really helps seeing others with facial palsy so this could be a new opportunity for those who haven’t been able to attend a support group before. We are still working on getting used to the technology but we have been offered a yoga session via Zoom and also one of our members can offer mindfulness. We will update anyone opted-in to Support Group emails next week regarding our progress. If you do want to participate in a Zoom session don’t feel that you have to be on camera.

Insights

Lorraine Thurston, who left us in December to start a new job as a bereavement counsellor in a hospice, kindly sent us an insightful piece about how she feels now having to wear a mask for work.

Link to article: COVID-19, counselling and wearing a mask

Information

During Awareness Week (was that really just over a month ago?) we published an informative piece about dental health and facial palsy and also produced a new poster.

Link to: What every dentist should know about facial palsy

Finally we also wanted to say another big thank you to all our sponsors and auction/raffle prize donors who supported our Comedy Night on 29 February. One of our sponsors Emteq would love to hear from you. They are currently running a survey about understanding people’s motivation and challenges in their facial rehabilitation practices. This is the survey link:

Link to Emteq Survey

We need your ideas

Every year when we support our Great North Run runners, after the event we follow the crowds back to the metro station, there is a sea of marathon vests with short slogans on the back. We don’t currently have a slogan. It is not an easy topic to encapsulate in one sentence because everyone’s experience of facial palsy is so different.

We want to ask two simple questions:

1) What does our charity mean to you?

2) What would the world look like if our charity did not exist?

Your answers could help us to create a slogan. Please email us with your comments.

Research

Joel approached Facial Palsy UK and asked us to publicise his study:

‘The role of attributions, shame, and self-compassion on the mental health of individuals with facial differences.’

Any enquiries about the study should be directed to Joel via email to joel.moxey@student.anglia.ac.uk and not to Facial Palsy UK. Thank you. Click the link to find out more.

Link to Research Study about Facial Differences

Thank you as always for your support.

The Facial Palsy UK team

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