Category Archives: Haemophilia B

A visual for those who missed the Youth Go Karting Day

The Youth Go Karting Day was a huge success and was not short on fun or competitiveness.

See it to believe it!

Teens knock the wind out of the track at Knockhill

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Thank you to all who turned up for Go Karting at Knockhill on Saturday! We had a brilliant time out on the track racing against each other.

It had been a while since the last youth event we’ve organised so it was an excellent opportunity to get the teens together to do something fun and build friendships.

After an hour of competitiveness, speed and multiple crashes into the tyre barriers (everyone crashed at least once!)  we ate lunch and had a chat about the types of events teenagers with a bleeding disorder would want to attend. We received plenty of feedback, but if you’re a teenager and you have ideas for events that you would be keen to go along to, then please let Alex know at alex@haemophilia.scot or 0131 281 7366.

In addition, we discussed setting up a WhatsApp group for teenagers with a bleeding disorder so they can keep in touch with their peers and discuss ideas for future events. Again, if you’re keen and a teenager, then please let Alex know and we can add you to the WhatsApp group.

There’ll be many more opportunities in 2018 for teenagers to get together. We’ll keep you posted with all upcoming events!

Guest blog: Darren Ford on his fundraiser skydive for Haemophilia Scotland

Darren Ford is the Facilities Co-ordinator at our Edinburgh office and raised just over £500 for a fundraiser skydive for Haemophilia Scotland. Contact Glenda at the office if you wish to do your own fundraiser on behalf of Haemophilia Scotland.

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Darren Ford , feeling relieved, with his tandem instructor following his brave leap from the plane.

After speaking with some of the lovely hard working staff at Haemophilia Scotland, I signed myself up for Skydive to raise some funds to support the great work they do. Now I should probably mention at this point I have a fear of heights so perhaps not the smartest move I’ve made.

The whole process was really easy, made more so because Haemophilia Scotland team were so helpful, along with the staff running St Andrews Skydive. It was intended to be a Santa Skydive but due to bad weather along with my luck we had to reschedule a few times.

We managed to finally get the jump completed on the 27th August 2017. I can honestly say it’s one of the best experiences I’ve ever had, and its all for a good cause! It’s no where near as bad as I thought it would be and it was highly exhilarating. I managed to raise over £500, and I would like to take this opportunity to thank everyone that donated. I hope you enjoy the video!

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.

Sporadic CJD cases in the UK bleeding disorders community reported

CJD

A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.

Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease.  Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes.  This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD.  Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD.  To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people.  At the moment there have been 178 cases of vCJD in the UK.

The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”

There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail.  In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.

Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions.  Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications.  We will be carefully monitoring the situation and will report any further developments on our website and to our members.

Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website.  The best place to go with specific medical questions about your health is your Haemophilia Centre.

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.

BREAKING NEWS: @alexdowsett live Twitter Q&A tomorrow at 3.45pm #HaemophiliaChallengesMe

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Many Haemophilia Scotland members got a chance to meet Alex Dowsett, the record beating elite cyclist who also happens to have Haemophilia, at our recent Try Something Different Day at Crieff Hydro.

He is the face of the Miles for Haemophilia Campaign which is raising awareness of bleeding disorders and the benefits of staying active for those that have one.

cracked-twitter-logo-psd47658As part of the campaigning he will be doing a live Q&A on Twitter from 3.45 – 4.45pm.  All you need to do to take part is tweet your questions including @alexdowsett and #HaemophiliaChallengesMe. If you have space to include us at @HaemophiliaScot too that would be great!

If you aren’t on Twitter but would like to take part, it only takes a few seconds to get started. Please make us one the first people you follow too.

dowsett-q-and-a-delayUPDATE

Sadly, the Q&A had to be cancelled.  However, it is going to be reorganised an we will post new details as soon as we have them.

 

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