VWD awareness day in Sheffield

Written by Jessica Bomford, August 30, 2023

More than 50 adults with von Willebrand disorder (VWD) got together for a day of sharing experiences and discovering more about treatment and care at an event hosted in Sheffield.

The awareness day, which was jointly organised by the Haemophilia Society’s VWD Working Group and Sheffield Teaching Hospitals NHS Foundation Trust on 26 August, was open to people who use Sheffield Haemophilia Centre. We hope to organise similar days in other parts of the UK for people with VWD.

‘We all have a voice’

The aim of the day, which was called ‘We all have a voice’, was to bring people with VWD together to discuss their experiences of living with the bleeding disorder as well as to involve healthcare professionals who gave updates on treatment, physiotherapy, dental care and the role of a multi-disciplinary team.

Attendees also had the chance to try some gentle yoga and took part in a drumming session hosted by Sarah Yaseen, better known as Sarah the Sufi.

We’re grateful to the European Haemophilia Consortium (EHC) for its sponsorship of the event. Our trustee Jo Traunter, who is also a member of our VWD Working Group and on the EHC’s VWD committee spoke to the audience about the role of the organisation. She also distributed the EHC’s bruise tattoos, pictured left, which look very realistic and are designed to open up conversations about symptoms of bleeding disorders, including bruising.  

Sunny Maini, our VWD Ambassador, and member of our VWD Working Group, co-organised the event in Sheffield with Cathy Harrison, Advanced Nurse Practitioner at Sheffield Haemophilia Centre.

‘Together we can make a change’

Sunny said: ‘The highlight for me was to see the VWD community all together, championing a common position. We agreed about the need to raise awareness about VWD and there’s a lot of work ahead if we are to achieve that. Each one of us can make a difference, but together we can make a change.’

Thank you to everyone who took part in the event, especially the healthcare professionals who volunteered their time to be present.

Join our VWD Working Group

Our VWD Working Group currently has six members and is looking for more participants. If you are interested in getting involved contact Sunny at [email protected].