Fishing for platelets… VWD explained?

Explaining a complex topic like Type 1 von Willebrand Disease (vWD) to patients and families is a real challenge.

“Getting across the science of how any bleeding disorder works can be tricky,” said Sarah Garside, Haemophilia Specialist Nurse at the Haemophilia Comprehensive Care Centre in Leeds. “Working with children means that I’m always trying to find fun ways to help information make sense. It also helps parents and carers too!”

Exactly how Type 1 vWD causes increased bleeding is “all about clotting and fishing rods and sheds,” according to a new video co-written by Sarah.

It’s an analogy that simply and clearly explains the physiology of clotting, the function of platelets and the role of von Willebrand factor in promoting clot stability. It also explains the mechanism of action of the most commonly used treatments desmopressin (and why, thanks to sheds, its effects are short-lived) and tranexamic acid. Although Type 1 vWD can cause some issues, its impact on daily life can be kept to a minimum with the right treatment and support from the medical team.

The video explains everything patients and their families need to know about Type 1 vWD and is now available on Haemnet’s YouTube channel. So go forth and share it with the community!

“This explanation for what Type I VWD is and how we treat it, has been used in our centre in Leeds for many years. It’s always been hand drawn, usually on a scrap piece of paper and given to the family at diagnosis. I just thought we could do it better,” said Sarah. “I love the animations Haemnet have previously produced and knew this was the answer.”

Sarah and Dr Mike Richards, the Centre’s Director of Paediatrics, worked with Haemnet’s Communications Officer Luke Pembroke to develop the three-minute video, which answers the questions most frequently raised by people newly diagnosed with Type 1 VWD and their families. The script is based on Sarah’s experience of explaining VWD to patients and their families.

Using specially commissioned animation (thank you, as ever, to the team at Woven Ink), the video explains that Type 1 VWD is an inherited bleeding disorder causing an increased tendency to bleed in about one per cent of people. Not everyone with Type 1 VWD gets bleeds but some get nose bleeds, increased bruising, mouth and gum bleeding, heavy or prolonged periods, and increased bleeding after injury or surgery.

Luke Pembroke, Communications Office, Haemnet, said: “It’s no easy task to explain the complexities of VWD to the layman. Despite a fairly solid understanding of haemophilia, my knowledge of VWD isn’t so strong… so when Sarah came to me with this idea to create a patient friendly animation explaining Type 1 VWD, I was all ears. It was a pleasure to collaborate with Sarah on the script and receive a live run through of the analogy from Dr Mike during my visit to the Leeds Centre. Science communication and health literacy is something we should encourage in the bleeding disorders community. This animation shows that it is possible to create engaging and concise content, that can form part of the MDTs toolkit when educating patients. Of course, a shout out to the lovely WovenInk team for working their magic as usual!”

“I cannot wait to start sharing it with our patients and with colleagues nationally,” said Sarah.

For more information about Type 1 VWD, your patients can visit the Haemophilia Society website at https://haemophilia.org.uk.