The Wire (Issue 6) - Spring 2018

ISSUE 6 Spring 2018

Engaging with the bleeding disorders community in Scotland

New UK contract for supply of Factor VIII products

Feeling on top of the world

Registered Scottish charity: SC044298

Over the last decade Scotland has joined with the rest of the UK in contracting for the supply of recombinant Factor VIII products. This process continues to yield competitive prices, allowing us to meet the increasing demand for Factor VIII (around 5% year on year) with minimal increase in expense to NHS Scotland. A new round of contracting has recently been completed and will come into effect from February 2018, when the main products we will use are Advate®, RefactoAF® and NovoEight®.

In order to meet the contractual volume commitments a minority of individuals will need to switch from their current Factor VIII to one of the above, all of which are recombinant products with an excellent safety record. Helixate NexGen® will no longer be available in the UK and individuals will be contacted to switch to another Factor VIII treatment.

Previous UK experience of switching Factor VIII treatments has raised no concerns. However, those switching may notice a difference in the

In May 2017, haemophiliac Chris Bombardier conquered Mount Everest, and eight months later stood atop Mount Vinson in Antarctica to successfully complete the Seven Summit Challenge by climbing the highest peaks on all seven continents. The Wire spoke exclusively to Chris about his life, his enthusiasm for climbing and how he has managed to pursue his sporting dreams despite having severe haemophilia B. (pages 10-13) reconstitution device that accompanies the Factor VIII – if this applies to you, your Haemophilia Centre will be in touch in the near future. If you are switching your Factor VIII treatment you should use up all your old Factor VIII stock prior to switching, and you should not mix two different Factor VIII products in the same treatment.

If you have any questions or concerns you should discuss these with your local Haemophilia Centre.

Contributed by: Professor R. Campbell Tait, Director West of Scotland Haemophilia and Thrombosis Centre Dr Ryan Rodgers, Consultant Haematologist, Royal Infirmary Edinburgh

WEB: haemophilia.scot

Telephone: 0131 524 7286 ~ EMAIL: hello@haemophilia.scot

Contact details ~ Chairman’s comment

AYE, WE CAN in 2018

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CHAIRMAN: BILL WRIGHT bill@haemophilia.scot 077855510456 CHIEF EXECUTIVE OFFICER Dan Farthing-Sykes dan@haemophilia.scot 0131 524 7286 FUNDRAISING OFFICER Glenda MacKenzie glenda@haemophilia.scot 0131 281 7343 ENGAGEMENT OFFICER Alex Whitteker alex@haemophilia.scot 0131 281 7366 THE WIRE EDITOR Hugh MacInnes hugh@haemophilia.scot Tel: 01851 810262 07787317936

CONTRIBUTORS THIS ISSUE: Bill Wright Dan Farthing-Sykes Alex Whitteker Glenda MacKenzie Hugh MacInnes Susan Warren Nancy Brodie Professor R. Campbell Tait (Glasgow) Dr Ryan Rodgers (Edinburgh) Dr Ron Kerr (Dundee) Chris Bombardier Jock Whyte

CONTACT DETAILS

HAEMOPHILIA SCOTLAND 4th Floor, Hayweight House 23 Lauriston Street Edinburgh EH3 9DQ WEB: haemophilia.scot EMAIL: hello@haemophilia.scot TEL: 0131 524 7286

reat news reached me on the day I write this. One of our younger members, Rory Hewins, has been selected to take part in the Scottish Championships of a very demanding sporting activity.

Fingers crossed for young Rory. He and others who demonstrate what is possible with a severe bleeding disorder are a true inspiration and make the job of volunteering to support folk and families with a bleeding disorder all the more worthwhile.

So, to borrow from one of the memorable Obama orations, ‘Yes, we can’ is, for those in Scotland with a bleeding disorder, an ‘Aye, we can’ message (see pages 7 & 8).

Good news is also filtering through about potential new possibilities for those with inhibitors albeit any of you who might be considering the new treatments on trial, and as yet not licensed, might want to ensure you have very thorough and ongoing discourse with your medical and nursing staff when considering this new avenue.

Meantime any of the small number of you who are anxious about being asked to switch products should initially discuss the matter with their haemophilia centre

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but if still really upset about the situation, contact our office and we would at least see if there is anything we could do to assist.

There is growing excitement surrounding the fast approaching World Congress. I am particularly looking forward however to meeting as many Haemophilia Scotland members as possible at our AGM on the day before the Congress starts. We are working on a programme for the day which is designed to entice you wherever you come from.

We are hoping to see some very well-known Scottish VIPs at some point during that first weekend.

At the same time, the situation with the forthcoming UK Inquiry into infected blood feels very daunting and will worry many who have either moved on in their lives or who have young families and avoided the worst chapter in the history of haemophilia.

I have to confess to experiencing a real sense of having a very big mountain to climb, with the potential for this process to foster division and frustration as much as the

by Bill Wright Chair, Haemophilia Scotland possibility of laying the matter to rest, finding out the truth, learning lessons, taking action, supporting people and moving on. We have just learned who has accepted the post of Inquiry Chair. It is High Court judge Sir Brian Langstaff, who went to school in Scotland. We do not know a great deal at present beyond that but are writing to him.and maintaining a line of communication to Governments, both north and south of the border, so that our voice can be heard.

Here in Scotland, the clinical review into the impacts of infection of Stage 1 hepatitis C patients is likely to be a more fruitful path for getting better support at an earlier time for those in Scotland who have yet to ‘catch up’.

We are working with its chair Professor David Goldberg and others toward that aim.

I really enjoyed our Hampden visit that took place recently. It was great to some new and ‘old’ faces. A fuller report will appear in our next edition. Let us hope that, with a new manager now in place, the national team will soon finally begin to fill the hopes and dreams of a loyal and patient support and, once again, get us to the final stages of a major championship.

In the mean time, we can draw some inspiration from the sporting success of young Rory.

Developments in EHL products ~ Iain’s 10K for Haemophilia Scotland

Enhanced Half-life Factor VIII and IX products RECENT DEVELOPMENTS IN RECOMBINANT FACTOR VIII AND IX TECHNOLOGY have focused on increasing the duration they remain in the blood stream. This enhanced half-life (EHL) effect can be achieved by attaching small components (e.g. albumin, polyethylene glycol or an Fc antibody fragment) to the Factor VIII or IX protein.

These strategies have proved most effective with Factor IX, increasing the half-life up to 3-fold, and allowing prophylaxis to be administered just once

weekly (or in some cases once a fortnight).

The EHL effect on Factor VIII is less dramatic with, on average, a 50% increase in half-life – but this varies between individuals and in some there is no discernible benefit.

Over the last year, Haemophilia Centres in Scotland have had access to two EHL Factor IX products (Alprolix® and Idelvion®) and one EHL Factor VIII product (Elocta®). Their use is primarily of benefit to those with severe haemophilia who require regular

prophylactic infusions of Factor VIII or IX. Those with difficult venous access may find them particularly useful, as less frequent injections may be required.

It should be noted that these EHL products may not be suitable for all with haemophilia.

Haemophilia Centres will already have identified those who they think might be most suitable for an EHL product. However, if you think you might benefit from their use, please discuss this with your local haemophilia team.

Professor R. Campbell Tait, Director West of Scotland Haemophilia and Thrombosis Centre Dr Ron Kerr Centre Director, Haemophilia Centre, Ninewells Hospital, Dundee

Iain runs the Glasgow Men’s 10K for Haemophilia Scotland We are grateful to everyone who helps raise awareness and money in support of the bleeding disorders community in Scotland.

Last summer, Iain Edgar ran the 12th annual Glasgow Men’s 10K for Haemophilia Scotland on Father’s Day. After setting himself a target of £250, he went on to raise the magnificent sum of £1,330, plus a further £268 in Gift Aid, for the Scottish charity, completing the event in an impressive 1 hour, 7 minutes.

Writing on his fundraising page prior to the event, Iain outlined his personal reasons for running the Glasgow Men’s 10K: “Haemophilia has had, and will have, a profound impact on my family. I am running to raise awareness of this condition which affects only 1 in 10,000 people.

Haemophilia Scotland’s mission includes, ‘....to

support, inform and advocate on behalf of all people in Scotland with haemophilia, von Willebrand and other bleeding disorders…‘, and I can think of no better way to raise awareness than by raising some money for this charity which connects families like my own to the haemophilia community and reduces the sense of isolation that being affected by a rare condition can cause.”

Following the event, Iain commented: “I ran the 10k. Thank you everyone who donated their hardearned cash to Haemophilia Scotland. The act of running 10k was a small gesture on my part. This challenge didn’t come close to the challenge that haemophiliacs face every day.

The haemophilia community is remarkable and at times we have been given both comfort

and inspiration from the groups and individuals who are involved. If you want inspiration then look no further than Adventures of a Hemophiliac - Chris Bombardier and Little Bleeders.”

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A big WELL DONE to Iain and everyone else who ran the Glasgow Men’s 10K for worthy causes.

ABOVE: Iain and his family after completing his 10K in support of Haemophilia Scotland

Haemophilia Scotland Events and Activities Haemophilia Scotland Chairman, Bill Wright, welcomed everyone to the Annual General Meeting (bottom left) and reported on some of our key activities over the past year.

These included: Our collaboration in the setting up of the Scottish Inherited Bleeding Disorders Network (SIBDN) which, according to its constitution, aims to “facilitate continued improvements in the care of patients with inherited bleeding disorders across Scotland by sharing or creating best practice, developing standardised care pathways, and supporting the collection and analysis audit information.

The network is accountable to NHS Boards and the Scottish Government Health and Social Care Directorate (SGHSCD) within the national commissioning process.”

The Network will offer a more coordinated, Scotlandwide, approach towards improving the treatment and care of people in Scotland who have an inherited bleeding disorder, bringing patient representatives, consultants, nurses, data managers, the Scottish Government and others together for this common goal.

Bill also reported that the Scottish Infected Blood Support Scheme (SIBSS) had been successfully launched and was now providing improved levels of financial support to those affected by the contaminated blood disaster.

Introducing Alex Whitteker

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n 2015, I ditched the sunny, lax lifestyle of New Zealand for a vitamin D deficient lifestyle here in Edinburgh, where the people and the scenery more than make up for it.

Prior to taking up my post as Engagement Officer with Haemophilia Scotland, I had gained extensive experience working with people from various backgrounds in the education, horticultural, non-profit and insurance sectors and have also interned at the national offices of Save the Children New Zealand and UNICEF New Zealand.

In my spare time I love to explore the outdoors with mates, reading autobiographies/biographies and cycling to new places. I also volunteer at The Welcoming, which helps refugees and migrants settle in to their new life in Scotland.

I’m working hard to come up with events and activities that will appeal to all our members and families and I would welcome any suggestions that you may have. Please contact me by phone at 0131 281 7366, or send me an email at alex@haemophilia. scot if you have any ideas for events or activities. I’d love to hear from you or, even better, meet you during these engagement days.

Haemophilia Scotland AGM and Cruise aboard the SS Walter Scott We held our AGM on 20 May 2017 at the Brenachoile Restaurant, situated at the at the south-eastern end of Loch Katrine in Stirlingshire. The nearby Trossachs Pier is home to the magnificent 34-metre-long SS Walter Scott. Launched in 1900, the vessel is the only surviving screw steamer in regular passenger service in Scotland.

Also of interest to those present was the latest news on the Malawi Diagnosis Project, which aims to improve the diagnosis, treatment and care of people in Malawi who have haemophilia. Prior to this Haemophilia Scotland sponsored initiative, only four people within the 16 million population had received a clinical diagnosis for a bleeding disorder (but no treatment), and no one had benefitted from proper laboratory testing for such a condition.

In support of this international project, Haemophilia Scotland received funding from the Scottish Government to run the Project with SHAD (Society for Haemophilia and

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Haemophilia Scotland Events and Activities The Haemophilia Society is the host organisation for the 2018 Congress. Under current WFH rules, Haemophilia Scotland is not able to be a member of the World Federation of Hemophilia (WFH), although we hope our members take full advantage of this prestigious event when it comes to Glasgow. Haemophilia Scotland aims to offer help with accommodation for any of our members who wish to attend.

Bill went on to describe how our Women’s Group was working with an international network of women to support the Women’s Booth at the Congress, which will be a vibrant and exciting space, highlighting the issues that affect women with bleeding disorders around the world. There is further information on the Women’s Booth on page 6.

Moving on to the annual accounts, our CEO Dan Farthing-Sykes presented the financial report for the period 1st August 2015 – 31st March 2016. The short financial reporting period was due to Haemophilia Scotland’s recent constitutional change from being a ‘society’ to becoming a Scottish Charitable Incorporated Organisation (SCIO), registered with and reporting to OSCR (Office of the Scottish Charity Regulator); with our financial end year also changing to 31 March to better reflect the UK tax year that many agencies follow.

Hugh McInnes, Lynn Fraser and Nikki Gandy were reelected as Haemophilia Scotland trustees, with Nancy Brodie also joining the board.

The SS Walter Scott about to dock at the Trossachs Pier Allied Disorders), which had been established in Malawi to promote the diagnosis, treatment, and care of people with inherited bleeding disorders, with its membership consisting of clinicians, healthcare professionals, patients and their families.

The Malawi Diagnosis Project initiative included public awareness campaigning within the country, as well as training for hospital staff to help diagnose suspected cases of bleeding disorders within the population, with new clinics being set up to offer testing and, where appropriate, treatment.

Members attending our AGM heard that the Malawi project had now been successfully concluded, with more staff trained and more patients diagnosed than originally targeted, with awareness-raising training delivered to over 300 health care professionals in 19 hospitals around the country. A media and promotional campaign also led to 200 patients being screened for haemophilia during a Diagnosis Day at Kamuzu Central Hospital in Lilongwe, resulting in 50 people receiving a laboratory diagnosis of haemophilia.

For further information on the work of the Malawi Diagnosis Project, see Issue 5 of The Wire (March 2017) or visit the Haemophilia Scotland website at https://haemophilia. scot/ Bill went on to outline some of the key events organised for members over the past year, with many aimed particularly at families and children, offering his appreciation to the Events sub-committee for their excellent work in producing such a varied and exciting programme of activities.

The Chair also thanked everyone who had participated in the Needs Assessment, with Haemophilia Scotland taking on board the resulting feedback to help inform and shape the charity’s future objectives. This work will also influence thinking within the Haemophilia Centres and the Network (see SIBDN above).

This year’s AGM will be held in Glasgow, just before the start of the 2018 WFH Congress, which is being hosted in the city.

Bill suggested that this was a once-in-a-lifetime opportunity that will offer our members access to all the latest thinking on the treatment and care of people with bleeding disorders, with over 5000 delegates from around the world visiting the city.

All aboard the steamer appeared to enjoy their trip and stunning scenery along the shores of Loch Katrine Following the AGM, many in attendance took the opportunity to board the SS Walter Scott for a scenic trip down Loch Katrine, which the rain failed to spoil. There was a genuine sense of history surrounding us as we voyaged a few miles down Loch Katrine – the source of Glasgow’s main water supply since 1859. As we sailed towards the loch’s northern shore, our onboard guide advised that these surroundings were once home to one of the Trossachs most famous sons, Rob Roy MacGregor, who was born in nearby Glengyle in 1671.

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Haemophilia Scotland Events and Activities

Strategic Review The day after the AGM, the Trustees met in nearby Aberfoyle for a pre-arranged ‘Away Day’ to reassess Haemophilia Scotland’s charitable objectives and make appropriate changes where required. For example, we agreed at our 2016 AGM to slightly amend our constitution to allow the charity, where possible, to support the bleeding disorders community internationally, not just within Scotland. The board also reviewed its Five-Year Strategy, taking in to account feedback from the recent Needs Assessment.

Shark Party ABOVE: Nuala McCartan, Mary Blyth and Glenda MacKenzie piecing together the Haemophilia Scotland panel.

BELOW: Susan Warren holding fabric that arrived from Quilt Project participants in Malawi.

Some were brave enough to handle reptiles like a corn snake or bearded dragon Back in July, we came face-to-face with some of the most awesome creatures in our seas at our Shark Party at Deep Sea World in Edinburgh. Well over one hundred people attended this fun family day out where you could get up close to these large predatory fish in the shark tunnel. There were more than sharks on offer, with a few individuals brave enough to handle some of the reptiles at the Centre, such as the corn snake and bearded dragon.

be made into a photo book at the end of the conference and shared with other Women’s Groups in the bleeding disorders community at home, in Europe and worldwide.

The Women’s Booth will accommodate four sections that come under the banners of:

Women’s Group 2018 is set to be a busy year with the WFH Congress coming to Glasgow between 20 and 24 May, and Haemophilia Scotland playing a small but important role in this by hosting the Women’s Booth.

The Women’s Booth was launched at the WFH Congress held in Florida in 2016 with the mantle handed on to Haemophilia Scotland for Glasgow 2018. The focus of the Booth is to raise awareness of how bleeding disorders can affect women and support greater networking through the sharing of personal experiences and better informing women throughout the world. The aim of the Quilt Project is to encourage women from around the world to participate in the making and embellishment of a quilt, contributing small swatches of materials from their own country of origin in order to bring the women together in a shared project. They are also encouraged to write a short paragraph on what their contribution represents to them by way of their bleeding disorder. It is hoped that this will

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Women with bleeding disorders Organisations working with women with bleeding disorders Men working to help women Healthcare professionals

Whilst this booth is primarily for women, we would welcome input from anyone who can contribute to any of these four headings. This can be women, men or healthcare professionals who feel they have something to offer and can spare the time to volunteer for the stand during the conference. Should you wish further information or to be involved, please contact Alex at Haemophilia Scotland (contact details on page 2).

The Haemophilia Scotland Women’s Group officially launched the Quilt Project at the Norton House Hotel in Edinburgh on 24 September 2017.

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Haemophilia Scotland Events and Activities After the race, participants enjoyed some lunch and chatted with us about the type of events that teens would like to attend in future, with our Engagement Officer, Alex, getting plenty of helpful feedback. If you have any ideas for events or activities for teenagers, then feel free to contact Alex at alex@haemophilia.scot or telephone on 0131 281 7366.

LEFT: A brainstorming session for the Quilt Project over afternoon tea at the Norton House Hotel

Practical Sewing Sessions held in Glasgow and Edinburgh To facilitate and encourage Haemophilia Scotland’s Women’s Group to participate, practical sewing sessions for the Quilt Project were held at the Haemophilia Centre in Glasgow on Wednesday 8 November and at our office in Edinburgh the following Saturday. These sessions offered wonderful opportunities for participants to get together and discuss the various and varied panels that will later be stitched together to produce the large and colourful assemblage of fabric pieces that will form the finished quilt.

Further information on the Quilt Project can be found on the website at: https://haemophilia.scot/2017/09/29/launch-of-thewomen-with-bleeding-disorders-quilt-project/

After receiving the chequered flag at Knockhill Racing Circuit

YOUNG ADULTS Teen Go Karting - Knockhill Circuit On Saturday 18th November, we invited teenagers affected by a bleeding disorder to race against each other on go-karts at Scotland’s national motorsport centre, the Knockhill Racing Circuit in Fife. It was an exhilarating afternoon for our teenagers to get together and enjoy a fun day zooming around the famous track.

Sporting Success Congratulations to young Rory Hewins (above) on his accomplishments in a sport you would not normally associate with haemophilia – Taekwon-Do! The Falkirk based youngster recently won Gold in Taekwon-Do ‘patterns’, which is an element within martial arts described as ‘a pre-determined set of moves against an imaginary enemy’. (continued on page 8)

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Haemophilia Scotland Events and Activities progression, although the majority of students who attend TKD [Taekwon-Do] do it for the fighting and sparring.

However, Rory has the chance to achieve Black Belt without having to throw a punch or kick in anger.”

We wish Rory well in his pursuit of sporting excellence in this ‘non-contact’ discipline within martial arts. Anyone with a bleeding disorder who is aiming to engage in a physically demanding sport or activity is advised to consult with their clinician or Haemophilia Centre before doing so.

Rory and fellow students from his local martial arts club enjoyed success recently at the Scottish Junior TaekwonDo Championships held at Armadale Academy, West Lothian, where Rory won Gold for Patterns.

His father, Dan Hewins, told The Wire, “Rory can’t do fighting or sparring due to his haemophilia, but students are able to progress through the belt stages with patterns, knowledge of Korean Taekwon-Do history and by learning the tenets.”

He added, “Fighting and sparring is not part of his belt

FAMILY CAMPS 2018 Barretstown 2018 Camp Calendar BARRETSTOWN have released their camp calendar for 2018.

The camps are free and run for children, teenagers and families affected by serious illness and offer a range of adventurous, fun and challenging activities that are supported behind the scenes by 24-hour on-site medical and nursing care. The camp, which is located at Barretstown Castle, Ballymore Eustace, County Kildare in Ireland was founded by Hollywood actor Paul Newman in 1994 and modelled on his renowned Hole in the Wall Gang Camp in Connecticut, USA. There are opportunities for families to attend the spring and autumn family camp weekends but, unfortunately, the places are limited.

So, you will need to apply promptly.

The summer programme for children attending on their own, without parents being present, commences in June. If you’re interested in attending one of the camps in 2018, please apply at https://www. barretstown.org/families-andcampers/registration/

Over the Wall Camp Calendar 2018

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Camps for Siblings Monday 16th – Friday 20th July Strathallan School, Perth

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Family Camps Friday 18th – Sunday 20th May Tulliallan Police College, Fife

Summer

Autumn

Spring 2

16th Feb - 18th Feb (Family Camp)

Summer 1 11th June – 18th June, Autumn 1 Age 13-17

14th Sept – 16th Sept (Family Camp)

Spring 4

2nd March – 4th March (Family Camp)

Summer 3 3rd July – 9th July, Age Autumn 2 7-17, Sibling

21st Sept – 23rd Sept (Family Camp)

Spring 5

9th March – 11th March (Family Camp)

Summer 5

27th July – 2nd August, Age 7-13

Autumn 3

28th Sept – 30th Sept (Family Camp)

Spring 6

26th March – 29th Summer 6 March (Bro & Sis) (Age 7-17, Ireland and UK)

7th August – 13th August, Age 11-15

Autumn 8

1st Nov – 4th Nov, Haemophilia (Age 7-17, Ireland and UK)

Spring 8

13th April – 15th April (Family Camp)

Autumn 9

9th Nov – 11th Nov (Family Camp)

Spring 9

20th April – 22nd April (Family Camp)

Spring 10

27th April – 29th April (Family Camp)

Spring 11

4th May – 6th May (Family Camp)

Wishing Aileen our best wishes on her retirement We would like to wish Aileen Gibson our best wishes on her retirement as Haemophilia Specialist Nurse at the New Royal Hospital for Sick Children in Glasgow.

Aileen has, over the years, helped countless families come to terms with the diagnosis of a bleeding

Health Challenge Camps Sunday 8th – Friday 13th July Strathallan School, Perth

OVER THE WALL is a UK charity that is also inspired by Paul Newman’s Wall Gang Camp for children coping with serious medical conditions.

They have also released their camp calendar for 2018 [see below]. Their camps are FREE! If you would like to attend one, apply at https://otw. campbrainregistration.com/ Spring

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condition, and subsequently guided them through all the challenges, bumps and scares that young families with a bleeding disorder experience.

In December 2016, Aileen was the deserved recipient of the Best Haemophilia Nurse Award presented by the Haemophilia Society.

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Barretstown Camp Calendar 2018

Scotland and Kenya share experiences through twinning arrangement

Haemophilia Scotland is twinning with the

by Susan Warren Kenya Haemophilia Association L ast summer the WFH invited Lawrence and I to undertake an assessment visit to Nairobi with the Kenya Haemophilia Association (KHA).

We visited Nairobi for five days during which time we met a group of very dedicated health care professionals and patients who had revived their organisation in 2014.

We had the opportunity to meet many families with a bleeding disorder in their homes. Some living in impoverished situations, all gave us a very warm welcome and a muchneeded cup of tea.

Nairobi is a large, extremely congested and polluted city, with travel to and from their homes often taking hours. We had the opportunity to visit Kenyatta Hospital, where the Haemophilia Clinic is situated next to the Blood Bank, and met a family whose baby had just been diagnosed.

After meeting the hospital director, we made the usual visits to officials in the Department of Health, including the Deputy Director for Health who is supportive of the Haemophilia Clinic and the work of KHA. Our final day was spent with all committee members looking at their Strategic Plan and working out in which areas we thought we could work together. Our experience in Malawi has shown that working together as a partnership benefits both organisations.

Susan with Irene Chami from the WFH visit Moline and her husband and new baby. Susan and Moline met at the Women’s Booth at the WFH Congress in Orlando 2 years ago.

Professor Karanja Njoroge, chair of the Kenya Haemophilia Association, hosts a lunch meeting with KHA committee members, haemophilia treatment centre staff and youths with haemophilia at the Karura Forest Reserve, Nairobi. Susan and Lawrence also attended with Irene Chami from WFH. As a result of that visit, we are delighted to announce that Haemophilia Scotland and the Kenya Haemophilia Association have been accepted into the World Federation of Hemophilia (WFH) Hemophilia Organization Twinning (HOT) Program. The HOT programme twins emerging and established haemophilia patient groups to share knowledge in areas such as patient education, outreach, fundraising, and all other aspects of operating a successful haemophilia patient society. Our twinning will run for up to four years.

We are currently planning to host a delegation from the KHA at our AGM in Glasgow on 19 May so that Haemophilia Scotland members can hear about how bleeding disorders are treated in Kenya and the challenges they face. Our two boards of trustees will then work closely together to look at common strategic questions and opportunities.

Haemophilia Scotland are grateful to our international volunteer, Lawrence Lincoln, who provided valuable support during the twinning evaluation visit. Having a young man with severe Haemophila who has been on prophylaxis most of his life

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Lawrence gets to know another young person with haemophilia while visiting a family at their home in Nairobi gives hope to those living, until fairly recently, without any treatment.

Kenya now receives factor through the WFH Humanitarian Aid Programme, and those with severe haemophilia receive prophylaxis once a week with longer lasting products.

However, there are still many, many people in Kenya who are undiagnosed and therefore receiving no treatment.

We are looking forward to welcoming the Kenyans to Scotland in May. Find out more about our twin at: http://haemophilia-kenya.org

Chris Bombardier - Man of the Mountains

Feeling on top of the world In May 2017, haemophiliac Chris Bombardier climbed Mount Everest. In January 2018, he climbed Mount Vinson in Antarctica to complete the Seven Summit Challenge - climbing the highest mountains on all seven continents.

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eing informed that your child has a bleeding disorder can sound more like a sentence than a diagnosis, often leaving young families feeling isolated and apprehensive about a future dealing with a life-long condition that is often associated with painful and crippling bleeds in to joints. However, good management of the condition and regular prophylactic infusions of clotting factor now enables haemophiliacs to live relatively normal lives and engage in activities that would have been unimaginable a few decades ago. One person who is certainly pushing the boundaries of possibility, focusing on ability rather than disability, is Chris Bombardier from Denver, Colorado. Thirtyone-year-old Chris, who has severe haemophilia B, has quite literally overcome enormous obstacles in his life, including the biggest of them all, Mount Everest.

As if conquering the 29,029-foot-high Everest in May 2017 was not enough, Chris Bombardier had earlier set himself the hugely ambitious target of climbing the highest mountains on all seven continents - a feat first achieved in 1985 when Dick Bass completed the daunting Seven Summit Challenge. Following Chris’ ascent of Everest, the only remaining obstacle in joining this elite band of climbers was Mount Vinson in Antarctica, which he successfully scaled on 6 January 2018 to become one of just over 400 people who can claim to have accomplished the gruelling Seven Summit Challenge. Chris’ continental quest began with Mount Kilimanjaro in Kenya (Africa) in 2011, followed by Mt. Elbrus (Russia, Europe, 2013), Aconcagua (Argentina, South America, 2013), Denali (Alaska, North America, 2014), Carstensz Pyramid (Indonesia, Oceania/Australasia, 2015), Mt. Everest (Nepal, Asia, 2017), before finally celebrating the new year by summiting Mount Vinson (Antarctica) in early January.

Chris on Aconcagua in Argentina before reaching the summit on 9 February 2013.

The Wire caught up with Chris Bombardier just days before he set off on his attempt at Mount Vinson to complete his long-held ambition of climbing the highest mountains on all seven continents.

Chris has always been an active person, with baseball fuelling his sporting passion through his high school and college years before his uncle later introduced him to hiking and climbing in the magnificent Rocky Mountains that cut through his home state of Colorado.

Chris was a teenager before he started regular factor treatment: “I actually didn’t start prophylaxis until I was thirteen. Prophy wasn’t a common treatment plan when I was young and I was really fortunate that I didn’t have many joint bleeds. I think I have only had two knee bleeds my entire life. My bleeds tend to occur more in muscles than joints.

“I was very active as a young child,” he adds, “which I think helped protect

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me from many bleeds, but when I became a teenager I had to switch to prophy treatment.”

However, his physical pursuits have inevitably led to some injuries. “I have had several pretty serious bleeds in my life, all related to sports in some way,” he says. “The first was in high school when I was 17. I played baseball and got hit with a pitch in my right calf. It instantly swelled up and I had trouble walking. Even with treatment it swelled to a point that it was pressuring nerves and there was some worry about compartment syndrome. Luckily it never got there, but I was on crutches for weeks.

“The second injury was in college. I tore some muscles in my left glute diving for a ball during a baseball game and, instead of coming out of the game to treat, I kept playing. It ended up swelling and becoming incredibly painful, enough so that I had to go to the hospital. It ended up being another three or four weeks on crutches.

Chris Bombardier - Man of the Mountains “The last and maybe worst bleed I had was in 2013. I was riding a mountain bike here in Colorado and crashed. I flew over the handle bars and land on a pointy rock. It hit me in the middle of my left quad. I infused shortly after, but it swelled so quickly that I was in excruciating pain. I ended up being on bed rest for several weeks for that bleed.”

Chris’ treatment is provided by health insurance obtained through his employer, although he has to pay a deductible each year before health insurance will support any medical care, with the factor product manufacturers also generally helping with the costs. “It’s a really confusing and complicated system here,” he adds.

A further complication for Chris that will be very familiar to other haemophiliacs is ‘needle phobia’, which he had to deal with as best he could during his youth and college years. Writing on his ‘adventuresofahemophiliac.com’ website, he records: “This might sound crazy …… but I hate needles.

I’m terrified of them. I loved baseball so much I knew I had to get over this hurdle. Although I learned to self-infuse, that challenge still exists today.”

family,” he says, “though no one else is currently living with it. My mother had two uncles with haemophilia, but they passed away before I was born, unfortunately. So, I never had the opportunity to meet them.”

His enthusiasm for sport, particularly climbing, remained undiminished throughout his youth and adolescence.

His uncle, Dave Bombardier, an accomplished climber in his own right, supported the young Chris in pursuing his sporting ambitions, despite climbing being physically demanding and not, on the surface, an ideal pursuit for someone with a significant bleeding disorder.

A young boy with haemophilia being treated at hospital in “My uncle was a huge Kathmandu. during the making of the Bombardier Blood influence,” he says. “When I documentary. started getting interested in really appealing about hearing about climbing and the outdoors, his challenges and struggles on the he really took me under his wing. He climb and how they overcame it. introduced me to mountaineering, mountain biking, rock climbing and “We started talking about climbing so much more. He never thought another one of the Seven Summits I couldn’t or shouldn’t do these together when I was offered the activities because of my haemophilia. opportunity of traveling to Kenya to He also taught me that there was a help setup a haemophilia lab and correct way to do everything. Safety clinic. That’s when I looked at the map was always the first priority, and and realized that Kilimanjaro was As is typically the case, haemophilia with my haemophilia it just meant only a few hundred miles away, so we has passed down Chris’ maternal that there was another step in that went for it. I invited my uncle to come line. “Haemophilia does run in my process.” along and we climbed together. When I summited, I realized that the Seven Dave Summits was possible and that I was Bombardier going to attempt it.” was also instrumental Feats of physical endurance, such in planting the as mountaineering, demand high seed of the epic levels of fitness and training as well as Seven Summit additional specialist support at times.

Challenge in “For the last two climbs I’ve hired his nephew’s a coach. He specializes in training head. “My uncle high altitude athletes and he was was the one incredible. The training was really that brought dynamic. It involved a ton of cardio, the Seven like running, and interval training Summits to my with a heavy pack. I also did a bunch attention. He of core training and body weight climbed Denali, exercises. At the peak of training I was North America’s doing about 8-10 hours of training highest peak, Chris being infused by teammate Vibeke Sefland, while climbing Denali. Vibeke each week.” has been with Chris on many of his climbs, including his trip to Antartica where he in 1998 and No matter how hard he trains, or would share completed the Seven Summit Challenge. Vibeke was keen to learn and practice how physically fit he is, Chris requires infusing Chris in case there was an occasion where he could not do it himself while his stories on his climb. There regular infusions of clotting factor climbing. Chris is usually happy to oblige as he readily admits that he does not was something particularly like injecting himself due to his phobia of needles. (continued on page 12)

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Chris Bombardier - Man of the Mountains inequalities in haemophilia care around the world. While visiting Kenya in 2011 with the Indiana Hemophilia & Thrombosis Center to help set up a haemophilia lab and clinic, Chris used the opportunity to climb Mount Kilimanjaro, the highest peak in Africa. This inspired him to aim to be the first person with haemophilia to climb the highest mountains on all seven continents, including Mount Everest.

Chris in Nepal (continued from page 12) (Factor IX) to control bleeding; even when he is 20,000 feet up a mountain.

Asked if injecting himself at such altitude and extremes of cold caused him any problems, Chris responded, “I found a vein every time,” adding, “It actually wasn’t too much more difficult. When climbing at high elevations you drink a lot of water and that helped my veins. I also utilized my sleeping bag as my infusion area, which worked nicely. I would mix my medicine while laying in my warm bag and get everything ready. Then I would sit up quickly and go for it and it seemed to work great.”

As to his first thoughts on scaling Mount Everest, Chris told The Wire: “My mind was racing when I reached the summit! It was so hard to process that I was actually standing at the highest point in the world. My mind immediately went to my wife and how proud she would be of me, also I thought about all the guys with haemophilia I met in Nepal. I had a flag with all of their signatures on it, and in my toughest moments I thought about the struggles they had to go through and knew that I could overcome mine. I was so proud that I got to bring them to the summit with me and so proud that this dream came true.”

The support of his wife, Jessica, and his family has been invaluable to Chris during his climbing expeditions. “I couldn’t have done this without my wife, especially. She has believed in this dream, even when I had my doubts. When we were struggling to pay the bills and I was spending money climbing, she reassured me that this was important. She was my rock.

“My dad was always behind the idea, but my mom was a little slower to come around, which I can appreciate.

She was nervous and definitely didn’t want me to climb Everest a few years ago, but as we got closer to the actual climb she really came around.”

Asked if there can be any ‘challenges’ remaining for him, once he had climbed Mount Vinson and completed the Seven Summits, Chris told The Wire: “There are many challenges after Mount Vinson, but I don’t think they will be as physical. I’m working on completing a Master’s Degree in Global Health, and I think working to improve healthcare around the world will be a fun new challenge. My wife and I are also, hopefully, starting a family soon, which will be a totally different kind of challenge.”

Chris has used his climbing expeditions and experiences to inspire others and highlight

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However, Chris would also witness for himself the tough reality for haemophiliacs living in developing countries. Consequently, he committed himself to use his climbing expeditions to raise awareness about haemophilia around the globe and help fundraise for his favourite charity, Save One Life (www.saveonelife.net), based in Georgetown, Massachusetts, of which he is a board member. This charity provides financial assistance to children and families in 13 developing countries through direct sponsorship, scholarships, and micro-enterprise grants – support that is invaluable where people are doubly burdened through poverty and medical need.

“Save One Life is really important to me for several reasons,” he enthuses.

“They provide some really important programs for individuals with bleeding disorders in developing countries.

Chris Bombardier - Man of the Mountains ~ Poetry Corner Everest Base Camp, filming and managing production there for the duration of his time on the mountain, with Chris recording on specially designed cameras to log his journey and final summit of Everest.

“I have visited several developing countries, and haemophilia looks vastly different than what it does in the developed world. Through the sponsorship program, Save One Life is able to support families of young children with bleeding disorders that not only struggle financially, but physically as well. These funds help keep the kids in school, pay for basic necessities and travel to hospitals in order to get care.

The film - ‘Bombardier Blood’ - is intended to raise awareness around the world of the challenging conditions faced by haemophiliacs in Nepal, who are still suffering from the aftermath of the 2015 The team take a ‘selfie’ at the top of the world after summiting Mount Everest earthquake, while also supporting the work of haemophilia Hopefully, when the WFH Congress communities in other developing comes to Glasgow in May 2018 – nations. exactly a year after he conquered Haemophilia Scotland congratulates Everest – we will have an opportunity Chris on his magnificent to meet Chris and hear a little more achievements in climbing some of about his many adventures and the biggest mountains in the world, charitable work with the global including the highest peaks on all haemophilia community. seven continents, proving that with determination and the right support, seemingly insurmountable objectives All photos courtesy of Chris Bombardier can be achieved despite living with a ‘adventuresofahemophiliac.com’ challenging bleeding disorder.

“We also provide scholarships so that individuals can gain access to education that they could never afford, which leads to careers that are more conducive for someone with haemophilia, and grants to start small business so that they can become productive members of their society and families. The results we have seen through these programmes are incredibly exciting, and I truly believe in the organization.”

Chris partnered with the WEBBYAward winning production team at Believe Limited to film his journey through Nepal during his attempt on Everest in 2017. Filming included a six-month pre-climb training period, as well as individual interviews with haemophilia community members in Nepal while he was there. The Believe Limited team accompanied Chris to

Infection?

by Jock Whyte

I will never escape this beautifully bewildering thing.

It is rooted throughout my entire existence.

It has constructed a firm distance between reality and I.

I’m longing to log life’s horror story.

Maybe it could bring me glory?

My tale is getting gauntly gory.

All that I can think is how much this kills.

Many expect me to lead a life of elegance and ease.

Others are merely down on their knees.

But I will not let it beat me.

My expectations are low and getting

Maybe it is a benefit.

That I own this eye-opening defect.

lower.

It is so perfectly productive at shifting the stability of reality and I.

We have a deteriorating relationship, reality and I.

inspired by yet another ‘eye-opening’ event 13

Haemophilia Scotland Fundraising

Glenda MacKenzie joins Haemophilia Scotland as our new Fundraising Officer

POTENTIAL FUNDING SUPPORT FOR YOU Funders of individuals and Families Just to remind you that the following organisations give grants to individuals and families (Haemophilia Scotland cannot apply as we are an organisation). Good luck if you do apply. there are so many opportunities for Haemophilia Scotland as we’ve not done this before. Getting our name out there and introducing ourselves to potential funders will be hugely important for our long-term future and sustainability. If you can think of a trust that may be suitable for me to approach, please let me know.

Equally, if you know a Trustee of a funder, please get in touch – quite often, a warm introduction is worth more than a six-page application.”

G

lenda and her husband James live in Edinburgh and have two adult children, Jamie and Sophie. She has been actively involved in fundraising for over thirty years and will clearly bring a wealth of knowledge with her to this new and key position with Haemophilia Scotland.

Speaking to The Wire about her career before joining the Haemophilia Scotland team, Glenda says: “I’ve worked at Director level and built very successful fundraising teams for small, medium and large charities, raising millions of pounds. However, I’ve also been a sole fundraiser with lots of grassroots experience. I’ve covered all aspects of fundraising, from large gala balls right down to bucket collections at Tesco; successfully applied to many trusts and foundations for funds to support projects and core funding, and abseiled off many a tall building to boot!

“That’s a quick look at me. Now I’m looking forward to finding out about and meeting lots of you in the not too distant future.

“My plan is to focus on raising funds from the pharmaceuticals, trusts and foundations. I’ve been looking at who we can apply to for the various projects that we need funding for. It’s really exciting, as

Do you have a Will? Have you thought about making one?

If so, would you consider leaving a little gift in in your Will to Haemophilia Scotland? Legacies make such a lasting difference to charities. We are no different. However, to date, we have received no income from legacies. If we were to receive legacy income, or indeed know of any pledges you may wish to make, it would allow us to plan confidently for the future.

The Roald Dahl Foundation give grants for families facing financial hardship while caring for a seriously ill child. They provide support to help families cope, from respite breaks and counselling, to hospital travel expenses. Find out more or apply online for a Marvellous Family Grant. http://www.roalddahl.com/charity/ family-grants Family Fund, Take a Break grants enable families caring for a disabled or seriously ill child or young person to have the opportunity to choose how they would like to take a break, with a view to improving the quality of life, health and wellbeing of the whole family. https://www.familyfund.org.uk/takea-break Merlin’s Magic Wand is a worldwide charity for children. They arrange magical days out at Merlin Entertainments attractions, such as LEGOLAND Resorts®, SEA LIFE Centres and Madame Tussauds. https://www.merlinsmagicwand.org/

Darren Ford jumped out of a perfectly functional aircraft to help raise funds for Haemophilia Scotland

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Haemophilia Scotland Fundraising

Darren’s Skydive

The Contaminated Blood Memorial Fund Fancy Dress night LAURA BROWN organised a fundraising Fancy Dress Party for the Memorial Fund on 27th October in Glasgow. Family and friends bought tickets and had great fun dressing up, winning raffle and tombola prizes and raising lots of money on the night. Many thanks to all involved, particularly Laura.

Darren is safely back on terra firma with his skydive tandem instructor

D

arren Ford, who is the Facilities Co-ordinator at Hayweight House, the Scottish Council for Voluntary Organisations (SCVO) office complex in Lauriston Street, Edinburgh, where Haemophilia Scotland is based, raised just over £500 for us with a fundraising skydive.

Commenting on his jump, Darren said: “After speaking with some of the lovely hard-working staff at Haemophilia Scotland, I signed myself up for a 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 the 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 it’s all for a good cause! It’s nowhere 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.

My video is on Haemophilia Scotland’s website – Enjoy!”

Laura reaches for the skies Not only did Laura organise a Fancy Dress Party in support of the Memorial Fund, a few days later she also completed a tandem Skydive, raising over £1300 from the two events.

Well done Laura and thank you again for all your fundraising efforts for the Memorial Fund.

TOP RIGHT: Laura letting her hair down at the Fundraising Fancy Dress Night that she organised.

ABOVE: Laura takes in the view during her skydive

F

OLLOWING A SUCCESSFUL POP-UP CHARITY SHOP last year, Cheryl and Leone Bisset have now raised over £2000 towards the Contaminated Blood Memorial Fund; d testimony to the hard work and commitment they have given to this lasting tribute.

The fund, which currently stands at around £14,000, will be used to commission and deliver a memorial that will be accessible, durable and appropriate in commemoration of those who died as a consequence of receiving contaminated blood or blood products in the course of medical treatment.

Some of our members will be hosting another Pop-up Charity Shop in Coupar Angus on 5 May. If you have any items in good condition which you no longer require, please contact Leone Bissett at Leonebissett@ hotmail.com. Items such as toys, baby accessories, clothes, bags, accessories, brick-a-brac, games, household items, small pieces of furniture, DVDs, etc. would be most welcome. Drop off points are in Edinburgh and Kettins. The funds raised from this event will go to the Contaminated Blood Memorial Fund.

Then, on 2 June, there will be a Coffee Morning in Alyth, with 50% of the money raised going to the Contaminated Blood Memorial Fund.

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Diary Dates for 2018 There are a number of activities below that are worth noting for the diary, with more dates to enter later as the year progresses MARCH 10, 2018. 2:00PM-5:00PM Newly-diagnosed day Kidz World, Alloa.

JULY 17, 2018 12:00PM-5:00PM Landmark Forest Adventure Park

This will be an event for parents with newlydiagnosed small children that will offer an opportunity for families affected by a bleeding disorder to meet, share experiences, and hopefully become part of our support network. We, at Haemophilia Scotland, also use occasions like this to listen to and better understand the various needs and aspirations of our members.

Bring your hunger for adventure and thrills to this free event. From a wild water coaster through to a butterfly house, there’s something for everyone.

Lunch will be provided.

MAY 5, 2018 Contaminated Blood Memorial Fundraiser Pop-up Charity Shop in Coupar Angus (see p. 15)

MAY 19, 2018 Haemophilia Scotland ‘Gathering’ and AGM at Glasgow Science Centre.

This event, on the eve of the WFH Congress in Glasgow, will include discussions on recent developments in treatment for bleeding disorders and explore support topics, followed by dinner at The Village Hotel.

MAY 20-24, 2018 WFH Congress With the biennial WFH Congress being hosted in 2018 by The Haemophilia Society in Glasgow next May, this event offers a fantastic opportunity for people in Scotland to attend the largest international gathering for the global bleeding disorders community, with Haemophilia Scotland playing its part by hosting the Women’s Booth.

JUNE 2, 2018 Coffee Morning in Alyth In aid of the Contaminated Blood Memorial Fund (see page 15)

JULY 29 - AUGUST 3, 2018 Teen Sailing Trip, Portsmouth, England Teenagers aged 12+ with a bleeding disorder are invited to join us on a sailing trip with the Tall Ships Trust, where they will learn how to sail, navigate and read charts. This is an excellent opportunity for teenagers with a bleeding disorder to socialise and support each other.

AUGUST 2018 (DATE TBA) Men’s Relaxation and Photography Retreat Explore therapeutic techniques in a quiet, peaceful location, away from medical environments.

FEEDBACK & VOLUNTEERS If there is anything that you would particularly like to do, or if you have any feedback on specific events or comments in general, please get in touch. We want to be able to offer our members activities and events that you would like to participate in.

As our events programme grows, more opportunities for volunteering are arising. If you would like to chat about volunteering or anything related to our events and support activities, please get in touch with Alex by email: alex@ haemophilia.scot or phone: 0131 281 7366.

4th Floor, Hayweight House 23 Lauriston Street Edinburgh EH3 9DQ haemophiliascotland.org hello@haemophiliascotland.org 0131 524 7286 ~ 07930 316190 16