Category Archives: Awareness

£7030 donated by Harburn Golf Club

Bill & Harburn Golf Club

Bill Wright (our Chair) accepts the cheque from Allan, Dougie, Linda, & Benny (right to left)

Haemophilia Scotland is immensely grateful to Benny, Dougie and Allan and all the members of Harburn Golf Club, after their recent amazing donation of £7030 towards the planned Contaminated Blood Memorial. We are delighted at this continued generosity from the Club and its’ members towards this fund. It sounds like the Texas Scramble for the golfers and the celebratory evening dinner was enjoyed by all.

We would also like to extend particular thanks to the many local businesses in West Calder who were so generous with sponsorship and support for the event; as were many other golf clubs across the country who donated prizes.

Huge thanks once again to Harburn Golf Club – this has really helped take the Contaminated Blood Memorial Fund much further forward towards its goal.

#InfectedBloodInquiry Update and Clarification

The Infected Blood Inquiry emailed Haemophilia Scotland and others today to provide an update following the close of the terms of reference consultation.

The consultation on the terms of reference closed last Thursday and the team has started work on analysing the responses we have received online, by letter, in emails, by phone and at meetings. On Tuesday Sir Brian Langstaff started work as full time chair of the Inquiry and is very grateful for your contributions to the terms of reference, including at the meetings with him during the consultation period.

They have also clarified that the Inquiry will cover all of those infected by contaminated blood or blood products.  This is the same approach to the different routes of infection that was taken by the Penrose Inquiry.  In Scotland, since the Penrose Inquiry, we’ve been working closely with those infected by blood transfusion as part of our relationship with the Scottish Infected Blood Forum.

I’m getting in touch today because I heard that following this Monday’s Victoria Derbyshire programme there had been some concern about how the full range of people affected by the infected blood scandal have been described. As Sir Brian made clear in his meetings with different campaign groups, the Inquiry will be investigating what happened to all those people who were infected, whether they were haemophiliacs or not, and also considering the impact on families.

The Inquiry has also indicated it is interested in holding further meetings to give more people the opportunity to engage.   We are already in touch with the Inquiry to look at ways of making sure people in Scotland have the chance to take up this opportunity.  We will give you more details as soon as we can.

The inquiry team is now starting to consider how we can best engage with the wide range of people affected as we go through the Inquiry process. Andy Burnham, the Mayor of Greater Manchester, has invited the team to meet affected people who have been in contact with him. This will be an opportunity for them to hear first hand how the Inquiry will work and to give their views about how they would like to engage with the Inquiry.

We would like to hold some more meetings outside London to get views on how people would like to engage with the Inquiry, including from people who have not yet had the opportunity to meet the team, so please let me know if you would like to suggest a particular location, and/or a group of people to meet. And of course, please don’t hesitate to get in touch with any other questions related to the Inquiry, and I hope you will share this note with your wider range of contacts.

They have also provided information about their new offices.  This is where the administration of the Inquiry will take place but it does not have the facilities to hold any of the oral hearings.  The oral hearings will be held in other locations.

Finally, you might like to know that we have now moved into the Inquiry office premises which are close to St Paul’s Cathedral,
Fleetbank House
1st Floor
2-6 Salisbury  Square
London
EC4Y 8AE

 

Today is World Haemophilia Day

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Glenda and Alex showing their support for World Haemophilia Day 2018

April 17 marks World Haemophilia Day. This year’s theme is “Sharing Knowledge Makes Us Stronger.”

The bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness, as well as to improve access to care and treatment. The WFH website has an extensive and informative resource base. http://elearning.wfh.org/

Another way of sharing knowledge is by meeting with others in our community. We organise a regular events programme which is FREE for members. It’s a fun and engaging way to make friends and share knowledge and experience.

To show support and raise awareness of bleeding disorders, landmarks across Scotland will be lit red. Haemophilia Scotland has received confirmation that these landmarks are are: Edinburgh Castle, Glasgow Science Centre, Horse on the M8, Jenners Department Store (Edinburgh), Melville Monument (Edinburgh), Ness Bridge, SSE Hydro, The Titan Crane and Marischal Hall (Aberdeen). Show your support and post photos on our Facebook page of you and your friends at the landmark. #WHD2018

 

#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 http://eLearning.wfh.org.

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,

 

Today is Rare Disease Day

The Haemophilia Scotland team showing their support for Rare Disease Day 2018

A rare disease is any condition which affects less than 0.1% of the population – that is 5 or fewer people in every 10,000 people.  All the bleeding disorders which affect our members are rare conditions.

There are thousands of recognized rare diseases, with more being identified every year. Research shows that 1 in 17 people will suffer from a rare disease at some point in their life.

Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders.  Although there are around 2,500 people in Scotland with a diagnosed bleeding disorder, there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases.  So, we may be small on our own but together we have a very loud voice indeed! “Looks like rare’s not so rare.”

 

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.

 

1

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.

S4

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.

3

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.

 

S6

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.

Andy Gunn featured in media for new album, “Too Many Guitars to Give Up Now.”

Andy GunnLong time contaminated blood campaigner and Haemophilia Scotland member, Andy Gunn, has been in the media recently chatting about his life and journey and to promote his new album, “Too Many Guitars to Give Up Now.”

He featured on BBC Radio Scotland and BBC Radio 2:

 

BBC Radio 2 interview: http://www.bbc.co.uk/programmes/b09q3rxl

Following the release of the music video for “Warm Heart Blue,” The Telegraph wrote a lovely review: http://www.telegraph.co.uk/music/what-to-listen-to/andy-gunn-performs-warm-heart-blue-music-session/

Support Andy by purchasing his music or by seeing him live at one of the events below:

10/02/18  Blue Lamp, ABERDEEN
16/02/18  Stramash, EDINBURGH
17/02/18  Stereo, GLASGOW
23/02/18  Eden Court, INVERNESS
24/02/18  MacPhail Centre, ULLAPOOL
08/03/18  The Cluny, NEWCASTLE
09/03/18  The Whiskey Jar, MANCHESTER
10/03/18  The Magnet, LIVERPOOL
11/03/18  Half Moon Putney, LONDON
17/03/18  Smokestack, LEEDS
18/03/18  The Maze, NOTTINGHAM

BOOK YOUR TICKETS NOW

Women’s Group Afternoon Tea in Glasgow

Thank you to those who joined us on Saturday for afternoon tea at the Carlton George Hotel in Glasgow. It was a brilliant opportunity to have a good catch up, talk about our panels for the Quilt Project, chat about the Women’s Booth, all over some mouth-watering snacks and litres of tea.

We were presented with some sandwiches, scones and an assortment of very sweet desserts which all went down a treat!

The atmosphere was abounding in positivity and it was immensely encouraging and heartening to hear how everyone’s panels were coming along for the Quilt Project and to see how excited everyone is for the Women’s Booth.

Whilst at the afternoon tea, it was announced that the Glasgow Centre is going to donate £1,000 to the Women’s Booth at Congress. We are blown away by the kindness and generosity of the Glasgow Centre and are hugely thankful and appreciative of their support. This is a significant year with Congress coming to Glasgow and this donation will make a substantial difference. Thank you, Glasgow Centre!

Panels coming together for the Quilt Project

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Ideas were bountiful yesterday at the sewing session in Glasgow and much progress was made on our panels.

Our honorary President, Susan Warren, brought along some beautiful fabric from Malawi which will make up part of the backing of the finished quilt, as well as some of the leaves that will go on the tree centrepiece. This fabric symbolises the strength of the partnership between Haemophilia Scotland and our friends in Malawi and will be a nice addition to the quilt.

So far, we’ve received panels from the USA, India, England and Scotland and look forward to receiving more in time for the January 31 deadline. When you’ve finished your panel, please send it to our office:

Haemophilia Scotland
Fourth Floor, Hayweight House
23 Lauriston Street
Edinburgh EH3 9DQ

We’re hoping to put together a book that would accompany the quilt which would give a bit more information about each of the panels. Would you please include a photo of yourself and a paragraph about you and what your panel represents and means to you.  Feel free to include this with your panel when you send it in, or you could separately send it to alex@haemophilia.scot.

We are very excited to see your panels and what the end result of this international collaborative effort will look like!

The sky’s the limit!

On January 6, 2018, Chris Bombardier proved that “ain’t no mountain high enough” for people affected by a bleeding disorder, having scaled Mt Vinson in Antarctica. It was the final mountain on his ambitious quest to climb the highest mountain on every continent of the world.

Chris became the first person with haemophilia to summit Mt Vinson in Antarctica and thus joined a group of just over 400 people who have accomplished the “7 Summits”.

Chris has smashed the stereotype that his condition has limited his lifestyle. Instead, he’s used it to show that he can lead a full, adventurous life. He’s a massive inspiration and we reckon Chris should try knock off the tallest mountain in the UK: Ben Nevis, right here in Scotland!

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