Tag Archives: World Federation of Hemophilia

World Haemophilia Day 2016 #WHD2016 marked by launch of Malawi Diagnosis project and awareness raising at science festivals

 

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Yesterday (17 April) was World Haemophilia Day.  Our sister organisations all over the world were marking the day with an amazing range of activities.

Here at Haemophilia Scotland, we like to use World Haemophilia Day to raise the profile of bleeding disorders in Scotland and of the work we are doing to improve treatment and care in the rest of the world.

This year we are launching our Diagnose Malawi Appeal and are raising awareness at science festivals.

Diagnose Malawi Appeal

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We are working in partnership with the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to improve diagnosis, treatment, and care in their country.

All over the world 1 in 10,000 babies is born with Haemophilia A.  However, despite having a population of well over 16 million there was nobody in Malawi with a laboratory diagnosed bleeding disorder when the project started.

We have received funding from the Scottish Government to run the Malawi Diagnosis Project with SHAD.  There will be a public awareness campaign in Malawi, and training for hospital staff, to try and find suspected cases of bleeding disorders.  New clinics will then offer testing, and where appropriate, treatment.

As part of our funding application we pledged to raise some of the money we need through community fundraising.  Money spent on this project goes a long way.  For example, running a single test will cost £15.  By the end of the project we hope that between 216 and 360 people will have been tested. Our first fundraising target of £1,500 is the equivalent of paying for the first 100 test. However, your money will be used to support the whole project.

The easiest way to donate to the appeal is on Just Giving. Alternatively, you can donate fifteen pounds by texting ‘MALA31 £15’ to 70070.  If you’d like to give a different amount just change the amount in your text. We will be posting more about the project during our ‘Malawi May’ when there will also be a cultural event to find out more about the county we are working with.

Following the success of Walk RED Malawi last year there will be another event this year.  Details are being finalised. Please put the 17th of July in your diary. If you are interested in finding out more please email Emma Black to be put on the Walk RED Malawi mailing list.

Science Festivals

To raise awareness of bleeding disorders in Scotland we have been taking part science festivals.  We worked with Blackwell’s Bookstore to run a very successful crime scene investigation event as part of the Edinburgh International Science Festival.  All day, amateur sleuths were cracking clues to solve a murder, while improving their knowledge of bleeding disorders.

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Today is World Haemophilia Day – building a family of support

World Haemophilia Day 2015 HS

The 17th of April every year is World Haemophilia Day.  This year’s global theme of ‘building a family of support’ is something we are strongly in favour of at Haemophilia Scotland.  Our mentoring and events programmes are all about helping the community come together in Scotland to provide mutual support.

Yesterday, we attended the European Haemophilia Consortium World Haemophilia Day event in Dublin.  We really appreciate this chance to come together as a family of patient organisations and talk about the big issues we all face – in this case the importance of patients in tendering for clotting factor products.

Today, we are delighted to have been invited to join the team at the Glasgow Haemophilia Centre for their World Haemophilia Day celebrations.  Glasgow is famed for its hospitality – as everyone who comes to the World Federation of Hemophilia Congress in 2018 will discover.  Today that hospitality means we will be enjoying a vintage tea party!

On Saturday the 25th we are holding our own World Haemophilia Day Event.  A dedicated band of fundraisers are “Walking RED Malawi” from Blantyre to Glasgow Green.  They are walking in tribute of the historic ties between Scotland and Malawi, first forged by David Livingstone who used to walk the same route to attend University.  All funds raised will support our work with the newly established patient association in Malawi.  It is not too late to sign up if you would like to take part.

WFH highlight the impact of having a bleeding disorder for women

This short video from the World Federation of Hemophilia (WFH) highlights some important issues.

  • Women with bleeding disorders experience symptoms, including but not just, heavy menstral bleeding.
  • Those symptoms lead to a reduced quality of life in all eight of the key measures.
  • The importance of Factor replacement treatment.

What does the WFH do?

Regular readers will know that everyone at Haemophilia Scotland is very excited that the World Federation of Hemophilia is bringing it’s conference to Glasgow in 2018.  We think this will be an exciting opportunity for everyone involved in bleeding disorders to Scotland to have access to the very best information from around the world.

However, many of you may not know much about what the WFH do and why their work is so important.  The recently released video above gives some highlights from the presentation by WFH President, Alain Weill, at this years conference in Melbourne.  In particular he talks about the challenge of making sure everyone is informed about the new therapies and the work they do to get treatment to people in developing countries.

WFH Congress Melbourne – Growing up with Haemophilia

Diagnosis can have a big impact on parents

Diagnosis can have a big impact on parents

Although some families find it helpful to spend time with older people with bleeding disorders it is important to remember that it can also be scary for patent who is new to the condition to meet people living with serious joint damage.

A bleeding disorders diagnosis can have a serious impact on the whole family.  Sibling relationships and rivalries are complex but there are surprisingly few studies look at families with a bleeding disorder.  There are positive sides to having a brother or sister with a bleeding disorder.  It can help improve a child’s ability to take responsibility as well as their communication skills.  However, some siblings, especially sisters and middle children, can experience anxiety and feelings of guilt.  It is striking brothers report that they believe that their own quality of life would be better if their sibling didn’t have a bleeding disorder.  Siblings also say that they need more information about bleeding disorders and that they need more time and attention from the adults in their lives.

A common mistake it to encourage guilt and to expect inappropriate levels of responsibility from young siblings; siblings shouldn’t be seen as supplementary care givers.  However, it can be very helpful for siblings to feel involved and to be encouraged to ask questions and express their feelings about the impact of the bleeding disorder on the family.  As far as possible parents should treat and discipline all their children the same way. However, ultimately, the best way to support children with bleeding disorders and their siblings is to support their parents and trust them to make good decisions.

Seeing your child in pain can be extremely distressing; as can having to hold a child down to find a vein and for treatment.  Parents often also feel an enormous weight of responsibility which can make it hard to let others, even another parent, care for a child with a bleeding disorder.  However, family bonds can be strengthened by the experience and some parents are more relaxed once they can do treatment themselves at home.

Adolescence is a difficult time for parents.  It is hard to step back and let a young person start taking responsibility for their treatment and to make their own mistakes.  Adherence to treatment can often worsen in this period as well.  Transition to an adult Haemophilia Centre can also add stress; although often parents are more worried about this than their adolescent with a bleeding disorder.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Inhibitors

An inhibitor is when someone’s immune response to clotting factor products prevents it from working properly.  Someone with an inhibitor can face many of the same challenges as someone without adequate treatment.

Inhibitors continue to be the major problem associated with treatment.  Researchers are continuing to look at the role a wide range of factors play in the development of an inhibitor.  There is particular interest in any non-genetic factors which might play a role as it may be possible to change some of these to reduce the risk to patients.  For example there is evidence that when more product is used the first time someone is treated then their risk of developing an inhibitor is higher.  This puts a premium on early diagnosis as younger children are typically treated with smaller amounts of product.  Those who are diagnosed later often present with a bleed and therefore need more product the first time they receive treatment.

We were also informed about some of the potential therapies for inhibitors which are being explored; how can the immune system be taught to recognise Factor and tolerate it?  A wide range of techniques from using viral vectors or nano-partials as delivery systems through to working with T-cells and Tregs to selectively switch off parts of the immune response are being explored.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Pain

Interesting use of sports tape reduce pain.

Interesting use of sports tape reduce pain.

Pain is triggered when the brain concludes, rightly or wrongly, that body tissue is in danger and action is required. Lots of areas of the brain are involved in pain which is why things like memories and smells can trigger pain. Pain cause loss of mobility and damages sleep which significantly reduces quality of life. 35% of people with Haemophilia surveyed in Europe in 2012 suffered from chronic pain.

The “find and fix” approach to medicine isn’t well suited to chronic pain which often has complex causes. No part of the body can send pain signals, only danger signals; the brain interprets it as pain. Therefore, your mental and physical state can make you more likely to experience pain. Levels of pains are always subjective.

Traditionally, opioid drugs have formed the backbone of treatment for chronic pain. However, many patients worry about toxicity and becoming dependent. It is now thought that in many countries opioids are over prescribed. If used long term then they can cause constipation, vomiting, apathy, mood swings and loss of concentration.

There is a lack of research on the treatment of chronic pain in people with bleeding disorders. However, good pain management should start with a pain assessment and often involves keeping a pain diary so a wide range of factors can be analysed. People with bleeding disorders can find it difficult to distinguish between a reoccurring bleed and pain from existing joint damage and should talk to their centre if they are in doubt.

Physiotherapy can play an important role in reducing chronic pain. Improving movement and posture can have a positive impact on pain. Increasing the strength do the muscles around a painful joint can reduce the pain. One speaker had found sports tape (Kinesiotape) very useful in tackling pain in people with Haemophilia. Another speaker highlighted the role of techniques such as complimentary therapies, positive thinking and psychosocial interventions in pain reduction. She also mentioned self hypnosis and stressed the importance of taking medications as scheduled and not only when you feel pain.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress Melbourne – Disclosure

The pros and cons of telling people about your bleeding disorder

The pros and cons of telling people about your bleeding disorder

The issue of who to tell about a bleeding disorder is faced by everyone affected all over the world.

Many of the issues are viewed differently and change as the treatment available in a country improves. When treatment is poor more people choose not to tell people. There are concerns about employment, marriage prospects and in some cases the cultural or religious interpretation of disabilities. As treatments improve, and social stigma reduces, the benefits of informing people, such as safety and having reasonable adjustments made, become more important. In countries like Scotland, this progress was set back by HIV and Hepatits C.

Visible bleeding and bruising on men and women can be viewed very differently. In men it can be a sign of toughness but women can face stigma and assumptions of abuse. Strong taboos around menstruation are also a factor.

These days people make more personal choices. For some it is important to show they have nothing to be ashamed of. In some cases this “honesty is the best policy” approach can reassure schools and employers that the condition is well managed. On the other hand, where treatment is good, some people see no reason to single themselves out as different by telling people about their condition.

Ultimately, there are so many different social, cultural and personal consideration the decision about who to tell is not a “one size fits all” issue.

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

WFH Congress – Patient & Provider Perspectives

There was a strong and varied panel

There was a strong and varied panel

The format of this Session was to hear from a patient, a healthcare professional, and the audience on three subjects.

Adherence to treatment regimes

There was a strong feeling that while patients are ultimately responsible for whether or not they treat themselves there are a lot of considerations that can make things more difficult. Sometimes people simply don’t want to be reminded about your condition. Often young people feel bullet proof and want to take risks. People also have busy lives which can make always taking treatment on time difficult. We also need to remember that injections can be painful and distressful experiences when you are young can make things harder as an adult. Even though everyone accepts treatment is a patient’s choice it can be hard for healthcare professionals not to take lack of adherence personally.

Counselling

Some people think negatively about counselling and see it as a sign of weakness. However, bleeding disorders in a family can lead to feelings of guilt, blame and resentment. Usually, people feel better about any issue if they talk about it. For most issues in life we talk to our friends and don’t think of getting a professional involved. However, formal counselling has several advantages.
– Can talk to people who aren’t so close to you that they are personally affected.
– Can give you the time and space to think about issues.
– There is no judgement in a professional counselling environment.
Talking to other people who have similar experiences can also be an important part of the counselling process. Properly training Patient Educators can help the to tell when someone needs professional help with an issue. Trained Patient Educators can help puncture the myths that can develop in some peer support groups.

Sexuality and Risk Reduction

Discussing issues around sex can be difficult for everyone involved. Conversations can be ducked in the Centre but many parents look to the Centre to raise these issues and vice versa. In reality everyone shares the responsibility. If a young person raises the issue it is likely they have thought carefully about who they are comfortable talking to.

Young people can be sexually active younger than either their parents to there Centre Team realise. Therefore, if problems are to be avoided it important to discuss these issues early. It may also be necessary to ask parents to step out of the room to allow a frank conversation. The language young people use when talking about sex, and what they mean by it, changes fast; it’s important to make sure you aren’t talking at cross purposes.

A good rule of thumb for questions about bleeding disorders and sex is “if you have blood there you can bleed there.”

Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.

World Haemophilia Day 2014 – Speak Out : Create Change

The theme of this year’s World Haemophilia Day is Speak Out :  Create ChangeIt is a very important message.  An estimated 1 in 1000 people have a bleeding disorder; close to seven million men, women and children around the world, but 75 per cent of them don’t know it and receive little or no treatment. Since its inception in the late 1960s, the World Federation of Hemophilia (WFH)  has been working steadily to improve those numbers and its vision is to provide treatment for all people with inherited bleeding disorders, no matter where they live.  You can make a donation directly to WFH to support their work or, to provide longer term support, why not consider becoming a member?

World Haemophilia Day 2014

April 17th is World Haemophilia Day every year.

One of the most effective tactics that WFH has used is to work with the patient organisations in each country so that we have a stronger and more effective voice with Government.  There work has shown that strong and active patient organisations lead to better treatment and care.  This is one of the reasons why one of the three main areas of the work of Haemophilia Scotland is advocacy.  We engage with a wide range of professionals, politicians and decision makers to make sure that the interests of people with bleeding disorders in Scotland are never overlooked.  To highlight this work, and mark World Haemophilia Day, we are honoured to be the guests of the Highland Council Provost for a Civic Reception this Saturday (there are still some tickets left if you’d like to come).  As well as raising awareness of the work of the WFH and Haemophilia Scotland we will be promoting an exciting new play about the contaminated blood disaster, Factor 9 which is at the Eden Court Theatre in Inverness later that night as part of it’s first tour.  This production is a fantastic example of people with bleeding disorders speaking out to create change.  If you would like to support plans to bring the play to the Edinburgh Fringe there is a Kickstarter funding appeal to raise the necessary funds.