The 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.
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.
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
- Follow @rarediseaseuk on Instagram.
- 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!
- Post your photo to Instagram, using the hashtag #RareDiseaseDay.
- Tag @rarediseaseuk in your post so we can re-post photos.
- Keep an eye on our Instagram, Facebook 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!
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.
Aileen 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.
The Haemophilia Society Buddy Awards are supported by Novo Nordisk
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.
As 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.
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.
Today is World AIDS Day. Since the Penrose Report was published we know that at least 59 people were infected with HIV in Scotland by being treated with contaminated plasma derived clotting products for their bleeding disorder.
They were some of the first people in Scotland to be infected and endured the early experimental treatments and suffered the extreme levels of stigma that came with the public panic about the virus. Everyone who lived through that period remembers the media stories and the impact it had on the way everyone with a bleeding disorder was treated. Tackling the stigma associated to HIV is a central plank of this year’s World AIDS Day campaign under the slogan “It’s not just retro it’s wrong.”
Of the 59 people infected there are just 20 long term survivors left. The pain of those families who lost a loved one hasn’t gone away. The long running campaign for answers about how this could be allowed to happen, to make sure all relevant lessons are learnt, and for their to be proper financial support, has taken its toll on many affected families. Everyone who was treated for a bleeding disorder in the 1970s and early 1980s was exposed to Hepatitis C, including everyone who was infected with HIV. That meant the disaster caused 478 Hepatitis C infections in people with bleeding disorders.
We also remember that it wasn’t just people with bleeding disorders who were infected. There were an unknown number of people who were infected with HIV through a blood transfusion and up to 2,500 may have been exposed to Hepatitis C as a result of the contaminated blood disaster in Scotland.
How you can help
You can help by increasing your own knowledge about the contaminated blood disaster and making sure other people hear about it too. There are summaries on the Haemophilia Scotland website and the Penrose Report can be downloaded online. However, a great way of understanding the impact of the disaster is to watch the powerful Dogstar play, Factor 9. You’ll need the password “Inverness” to view it.
The password is “Inverness”
Secondly, some of the bereaved families are working together to construct a lasting memorial to the victims of the contaminated blood disaster in Scotland. Their fundraising is going extremely well but continued efforts are needed if their loved ones are to get the fitting memorial they deserve. Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate a tenner your text should read “CBME23 £10”.
We are closing the needs assessment survey on Thursday morning (1st December). We’ve had a really good response so far but the more people who take part the more useful our results will be. We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.
There are some parts of Scotland that are a little under-represented at the moment. We are keen that the results reflect everyone in Scotland. So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.
If you do take part then you might also win one of three FitBits that we are giving away. They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!