Category Archives: von Willebrands Disease

#PressForProgress for women with bleeding disorders on #IWD2018

Today is International Women’s Day and Haemophilia Scotland is highlighting the important work of women around the world who are fighting for diagnosis and access to treatment for women with inherited bleeding disorders such as von Willebrands.  Working together on gender equality in treatment is integral to our partnerships with our friends in Kenya and Malawi.

To watch the full videos of this panel discussion of 5 different von Willebrand disease outreach programs and the keys to their success, and for hundreds more bleeding disorder resources, go to

The Haemophilia Scotland Women’s Group is proud to be hosting the Women’s Booth at the WFH Congress in Glasgow this May.  The booth will be showcasing amazing work from all over the world and providing a place for women with bleeding disorders to meet and exchange ideas.

Find out more about,


Visit to the Rare Books Collection at St Andrews

On February 5, a few of us visited the University of St Andrews’ Rare Book Collection to see how women’s issues are portrayed in historical texts. Thinking ahead to the Women’s Booth at Congress in May, a lot of attention and focus will be on the present and the future, so the purpose of this visit was to encapsulate the past with the present and future,

providing one holistic overview.

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The University of St Andrews is the oldest of the four ancient universities of Scotland and the third oldest in the English-speaking world. Founded in 1413, we were fortunate to have the opportunity to pore over books from as far back as the 1500s.

In doing so, we were able to see how women’s issues were portrayed in historical texts, which highlighted how far medicine and technology has advanced since then, leaving us optimistic about the progression of modern medicine.

We all thought the visit was worthwhile and we share our thoughts on the visit below.



The incredible level of detail. Note that the veins look like branches – Inspiration for the centrepiece for the Quilt Project.

Joan: Joan was intrigued with the sharp detail of the drawings. MRI scanners and the like are recent inventions that provide us with images of the interior of the human body. Historically, any research on the human body was done post mortem and an artist would illustrate the findings.


Susan was interested in the forceps illustration.

Susan: I was interested in the lift the flap illustration in the text book dated 1830. Basically, the illustration showed how to use forceps.  I had been very sick for 2 days before my son was born early at 38 weeks. My GP had the forceps ready as he thought I was too weak to deliver the baby alone. I had a great fear of anything like that and luckily my son was born without them. 4 months later he was diagnosed with severe haemophilia A, and I was diagnosed at the same time as having low factor levels.  Lucky for us both! Later, my GP remarked at how relieved he was about not damaging my son with using the forceps.  I added for me too – a reminder that childbirth is risky too for carrier mother.


Alex R was impressed with the printing

Alex R: Alex was really intrigued with how the illustrations were printed and was cleverly able to distinguish the difference between the laborious manual printing process of the 1500s to the machine printing of the 1800s.



Alex W: The book that stood out the most to me was a book from the 1500s that had illustrations of babies (with a full set of hair!) in the womb. There was one image in particular, of twins, that resonated with me because I know how complicated a multiple birth pregnancy can be. My mother gave birth to triplets, and without modern medicine, would most likely not have survived. I felt a bit sombre thinking about the risk that pregnancy carries but grateful for the advances in medicine.

We came away from the visit with insight into how women’s issues were portrayed in historical texts, and with a deeper and more comprehensive understanding of how the issues of the past, present and future are all interlinked.

Thank you to all who came to our Family Day at Hampden Park!

Thank you to all who turned out to our Family Day at Hampden Park on Saturday!

There were around 70 people who attended and it was an excellent opportunity for old friends to come together and for new friends to be made.

We were given a tour of the 52,063-seat stadium and got to explore the Hall of Fame and Football Museum. FIFA on the Xbox proved to be a popular museum exhibit!

Following the excitement of the museum, we went upstairs to the Millenium Suite and got to enjoy the panoramic views of the stadium over a tasty lunch.

While on the tour, we were given the chance to kick a ball into a goal and have the speed recorded. Teamophilia Scotland has some strong kickers with speeds in excess of 45km/hr recorded!

If you were unable to make it on Saturday, take a look at our Events calendar for our upcoming events. We hope to see you at one of our events soon!

What research question would do most to #StopTheBleeding?

Stop the bleeding

A Bleeding Disorders priority setting partnership (PSP) has been formed in conjunction with The James Lind Alliance and they are asking for your help.

The PSP is compiling a list of the 10 most important unanswered questions about bleeding disorders.  Once finished, the list will be used to promote research and attract funding.  It’s is very important that research goes into areas which have an impact on the lives of individuals and families with inherited bleeding disorders.  That is why the PSP want to encourage those who live with the conditions to feed in their ideas and propose research questions.

All you need to do to take part is complete a short online survey.

Stop The Bleeding Survey

The JLA is a non-profit making initiative which is a branch of the National Institute for Health Research (NIHR). The experience of the JLA with conducting PSPs is helping us shape and organise this project. You can find details about the JLA and other PSPs here.

Haemophilia Scotland is not a member of the PSP Steering Group but we are supportive of their objectives.

Read the Scottish Needs Assessment Report

In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network.  We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.

There report highlighted that there is unmet demand for physiotherapy and psychosocial services.  The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,

  • Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
  • Over half of people have additional social, emotional, or practical support needs.
  • People are experiencing stigma and discrimination at work.
  • While it is understood that activity is important, activity levels are low.
  • People wanted more local and specific support services.

The top three priorities for the future were,

  1. Reducing the number of bleeds
  2. Finding a cure
  3. Reducing the frequency of infusions

Read the Report

You can download a copy here or by signing up for a free account on Issuu.

We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.

Photos from the Scottish Parliament Reception

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Photos courtesy of Elspeth Parsons of The Lines Between.

We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.

Last chance to have your say in our #NeedsAssessment


We are closing the needs assessment survey on Thursday morning (1st December).  We’ve had a really good response so far but the more people who take part the more useful our results will be.  We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.

There are some parts of Scotland that are a little under-represented at the moment.  We are keen that the results reflect everyone in Scotland.  So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.

If you do take part then you might also win one of three FitBits that we are giving away.  They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!

Click here to take the survey

Upcoming events

Upcoming events

31st January, 1pm – Women’s Day at Blythswood  Square

Monte Carlo Room

We will be holding our first women’s group meeting on 31st January over lunch at the lovely Blythswood Square. This group is specially for women affected by von Willebrands Disease, haemophilia and those who carry the gene. Our first meeting will be a get together to link up and discuss ways of supporting each other. Spa treatments are available! Please let me know if you would like to book a place – fill in the form below or contact me via phone, email or facebook.

Events form for Women’s Day, 31st Jan

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