Category Archives: Awareness

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!

Today is World Mental Health Day

Selfie with Glenda

Today is World Mental Health Day and this year’s theme is workplace wellbeing.

Mental health problems can affect anyone, at any time of the year. Rich, poor; young, old; black, white; short, tall, it does not discriminate, even within our bleeding disorders community. We recognise our community has been affected enormously from the contaminated blood product infections and there have been ongoing consequences on our physical and mental health.

Having a bleeding disorder yourself, or in your family, can have an impact on your mental health. We are working to strengthen the bleeding disorders community in Scotland so people have the opportunity to meet more people who understand what they are going through.  Regularly touching base with friends or family to let them know how you are feeling can make a big difference.

We organise a busy events schedule for our community to bring everyone together. These events provide an opportunity to support your peers and they act as a forum to celebrate and discuss the things that are going well for us and to process and work through the not-so-great things. These events are important because we are a close-knit community that supports each other.

In the workplace, there can be fears around discrimination, anxiety about not being able to fulfil the duties of the role, or even concerns of how your colleagues may perceive you. These anxieties can be stressful and that’s why it is important to take time out of your day for a mental health break. We are working on a resource for you to assist you with knowing your rights in the workplace.

In our office today, we are taking a mental health break and are enjoying some delicious cake and tea. Why not take time out of your day for a mental health break, too? Go on, grab yourself a bit of cake!

A psychological support service pilot in Edinburgh is being rolled out to see how a national service could be provided.  This means that everyone can access the service.  We’ve had excellent feedback from people of all ages who have worked with Grainne and Nadine.  Talk to your Haemophilia Centre if you’d like to know more or be referred for a session. 

Glasgow Haemophilia Centre to mark World Haemophilia Day in style

Glasgow Vintage Tea 2017The Glasgow Haemophilia and Thrombosis Centre has plans to mark World Haemophilia Day with their usual combination of style, panache, and baking.  They are cordially inviting patients to join them on the 21st April from 1pm to 3pm when their waiting room will be transformed into a vintage tea room.

Victorian dress is encouraged but not compulsory.  Whatever you wear, we’d advice nothing with a tight waist as, if previous years are any guide, there will be a lot of delicious treats to try.  You can let them know you are coming along on 0141 211 4840.

This year the World Federation of Hemophilia is taking the opportunity of World Haemophilia Day to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.

World Haemophilia Day is officially on the 17 April every year but around the world many events fall in the surrounding days.

 

Powerful contributions at the #RareDiseaseDay Scottish Parliament Reception

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Bob Doris MSP was the host of this year’s reception which was also addressed by Shona Robison MSP, Cabinet Secretary for Health and Sport.

 

As many of our regular readers will know, the last day in February is always Rare Diseases Day.  Since 2011 it has been marked in Scotland by very well attended receptions at the Scottish Parliament organised by the Genetic Alliance.  This year’s event was held last night.

It is always extremely humbling to attend Rare Diseases Day events.  The vast majority of the conditions represented can only dream of the levels of treatment and care available for rare bleeding disorders.  In most cases it is takes years of battling to even to get a diagnosis.  Often there are only one or two interested clinicians in the whole of the UK and precious little effective treatment.  The patients and parents who attend events like this have often had to build their patient group from scratch.

This year there was plenty of good news about the advances in genetic sequencing and the exciting possibilities being opened up by the pace of change in Clinical Genetics.  We also heard about how the barriers to effective research in rare conditions can be overcome.  The Scottish Government were commended for their efforts towards implementing the UK Rare Diseases Strategy and Shona Robison MSP, gave a detailed report on the progress which has been made.

However, the most powerful contribution was made by Rebecca Holmes from Ehler Danlos Support UK (EDS UK).  She spoke about the experiences of people living with EDS and explained many of the typical symptoms.  She spoke out against the frustrating amount of misinformation that those affected had to overcome and called for a clear care pathway.  It was a salient reminder that while there has been some amazing progress in recent years there is still work to be done.

Are you ready for #RareDiseasesDay 2017?

It’s just 29 days until Rare Diseases Day 2017!  Rare Diseases Day is always on the last day of February, which this year is the 28th.

Here at Haemophilia Scotland we are great supporters of Rare Diseases Day.  A disease is considered rare when it effects less than 1 in 2,000 people.  That means even the most common bleeding disorders, such as Haemophilia A or B and von Willebrand’s Disease, are rare diseases.  Many of the inherited bleeding disorders are ultra rare and effect very few people in Scotland.

Rare Diseases Day gives us all a chance to come together with people affected by other conditions to point out that 1 in 17 people has a rare disease or condition at some point in their life.  So, when we you look at the big picture, having a rare disease isn’t that unusual at all.

One great way you can use Rare Diseases Day 2017 is to take part in the Rare Diseases UK  Instagram 28 day photo challenge!

How to get involved

  1. Follow @rarediseaseuk on Instagram.
  2. Take a photo  every day from 1-28 February based on the themes provided below. Alternatively you can just get involved on the days that suit you!
  3. Post your photo to Instagram, using the hashtag #RareDiseaseDay.
  4. Tag @rarediseaseuk in your post so we can re-post photos.
  5. Keep an eye on our InstagramFacebook and Twitter pages to see what other people are posting.

If you can’t manage every day, feel free to participate on the days that most appeal to you. there will be prizes for the best photos and most committed participants so good luck!

Help get #RareDiseaseDay trending and start a conversation about rare diseases!

 

 

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Congratulations to Evie and Aileen on their Buddy Awards

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Our friends at The Haemophilia Society came to Scotland yesterday to present two Buddy Awards.  Their CEO, Liz Carroll was here visiting the Glasgow Childrens’ Centre where Evie Moulds and Aileen Gibson became Buddy Award winners.

Evie was nominated for her Best Child Buddy Award because of the support she gives her brothers with their treatment and care.  She really takes and interest in looking after them and her award recognises just how much they appreciate it.

buddy-awards-glasgow-2016-002Aileen Gibson received the Best Haemophilia Nurse Award. She has helped countless families to come to terms with a diagnosis and guided them through all the challenges, bumps, scares, and scraps that young families with a bleeding disorder experience.  She is extremely well respected across Scotland for her dedication and knowledge.

Everyone at Haemophilia Scotland is delighted that Evie and Aileen have been presented with these well deserved awards.

Congratulations!

The Haemophilia Society Buddy Awards are supported by Novo Nordisk

 

 

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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