News

Cycling champ tours downunder

Mon, 16 Jan 2012 16:14:23 +1000

Alex Dowsett, a UK cycling champion with severe haemophilia A, took time out from his busy schedule to meet with some young Australians with haemophilia and share his tips on managing haemophilia as a competition-level cyclist.

Alex, a 23-year-old from Essex, England, is in Adelaide to compete in the Tour Down Under, an international cycling race which started in Adelaide on Sunday 15 January 2012. On Friday Alex met with some young men with haemophilia, along with other representatives from the local bleeding disorders community, Haemophilia Foundation Australia and the Haemophilia Centre, and gave some fascinating insights into championship cycling with a bleeding disorder.

To an absorbed audience Alex described his diet, training regime, his equipment and how he prevents and manages bleeds during training and events. He talked about his aspirations to compete in the 2012 Olympics and how it would work if he were selected.

Alex has a keen interest in Australian wildlife – he is hoping to see a live kangaroo on his travels in Australia.

To keep up with Alex’s progress in the Tour Down Under, follow him on Twitter - http://twitter.com/alexdowsett , or check the race coverage for his team on the Team Sky race hub - http://www.teamsky.com/race-hub/0,27714,24270,00.html

Haemophilia Foundation Australia would like to extend our thanks to Alex Dowsett for making his time available to Australian community members and to Team Sky for their support.

New mild haemophilia booklet

Fri, 23 Dec 2011 12:24:28 +1000

HFA has released its new mild haemophilia booklet, which is a comprehensive guide to living with mild haemophilia.

It includes information on:

understanding mild haemophilia
how to recognise a bleed and what to do about it
diagnosis, genetic inheritance and planning a family
treatment and care
what you need to tell your doctor, your dentist and other health professionals
special issues for girls and women
information on living well, including support, sport and exercise, travel, work, school, friends and relationships.

Click here to download the booklet or download sections by topic.

You can also order a print copy of the booklet by contacting HFA on:

T: 03 9885 7800 Toll free 1800 807 173
F: 03 9885 1800
E: hfaust@haemophilia.org.au

Season's Greetings

Thu, 22 Dec 2011 17:58:47 +1000

The Council and Staff of Haemophilia Foundation Australia wish you a safe and happy festive season.

Thank you for your support during the year and we look forward to working together again in 2012.

The HFA office will be closed from Friday 23 December 2011 and will reopen on Monday 9 January 2012.

During that time if you have any queries or need to contact HFA, please note that messages left on the answering machine will be monitored. If you have an urgent matter, please contact Sharon Caris on 0410 419 914.

World AIDS Day

Thu, 01 Dec 2011 00:00:00 +1000

Every year World AIDS Day is celebrated on 1 December.

For the bleeding disorders community in Australia it is a day to remember the people in the bleeding disorders community who were affected by HIV when HIV was transmitted through some batches of clotting factor treatment product in the mid 1980s. As a result of this tragic episode, some people lost partners, family members, children, patients, colleagues and friends. Some people continue to live with the challenges of HIV and some to inspire by their positive attitude and determination to build a better future.

In 2011 the World AIDS Day theme is “HIV is still here”. The aim is to encourage all Australians to be aware that HIV still exists in the community; to take action to reduce the transmission of HIV by promoting safe sex practices; and to accept and support individuals living with or affected by HIV.

World AIDS Day highlights the role of HIV positive people in strengthening community spirit. It shows how important it is for people living with HIV to feel included and to share their experiences and knowledge and educate others about HIV. It is a reminder that people living with HIV have the right to participate in the community free from stigma and discrimination.

Look out for the December 2011 issue of National Haemophilia in the next HFA E-news where Neil Boal gives a compelling account of his experience of living with HIV and hepatitis C co-infection and haemophilia and explains why he is committed to breaking down the barriers and stigma surrounding HIV and hepatitis C.

For more information about World AIDS Day, visit www.worldaidsday.org.au

Recombinant factor VIII tenders

Tue, 15 Nov 2011 13:17:33 +1000

The National Blood Authority (NBA) has recently completed tender processes for the supply of several blood products. The following information is important for people who are currently treated with recombinant factor VIII for haemophilia A:

Imported Plasma & Recombinant Product Tender Outcomes - Frequently asked questions (FAQs) for patients

http://www.nba.gov.au/supply/iprp-tender-faqs-patient.pdf

More information on the tender outcomes can be found on the NBA web site:

http://www.nba.gov.au/supply/iprp-tender-outcomes.html

Haemophilia Awareness Week

Fri, 07 Oct 2011 17:23:28 +1000

Haemophilia Awareness Week starts this Sunday 9 October and runs until Saturday 15 October 2011.

The theme this year is Health and wellbeing into the future – the decade ahead.

During Haemophilia Awareness Week Haemophilia Foundations, community members and health professionals around Australia work together to raise awareness about inherited bleeding disorders.

What does it actually mean to live with a bleeding disorder? People from the bleeding disorders community share the experiences of living with a bleeding disorder or of being a parent to a child with a bleeding disorder – the challenges faced every day, the reality of living with a lifelong disorder and what can be done about improving health and wellbeing into the future.

Most importantly during Haemophilia Awareness Week together we can all share and celebrate the ways we overcome these challenges as a community.

Getting involved

This year there will be local events including students doing school and classroom presentations, community sausage sizzles and health promotion across community groups, libraries, pharmacies, hospitals, doctors’ clinics and workplaces. One town is being "painted red"; some people are having a "wear red to work" day; others are holding quizzes.

How will you be involved in 2011?

Click here for more information, and to download or order promotion items.

Vale Peter Mathews

Mon, 12 Sep 2011 12:48:43 +1000

The HFA Council and Board acknowledges the passing of Peter Mathews on 5 September 2011.

Peter served as a respected Council member representing Haemophilia Foundation New South Wales (HFNSW) for many years and held the office of HFA Vice President from 2003-2009. Peter was also employed as the Executive Officer of HFNSW for more than 10 years.

Peter was loved and respected by everyone in the bleeding disorders community and everyone at HFA expresses their sympathy to Peter’s family.

Vision & Leadership Awards

Mon, 01 Aug 2011 15:28:47 +1000

The Haemophilia Foundation Australia Vision and Leadership Awards 2011 funding round is now open.

What would make a difference in your life?

5 Awards of $2,000 each are available for applicants who have a bleeding disorder or who are affected by bleeding disorders in one of these categories:

Young men and women aged 15-25
Men or women aged 26 yrs and over

The Vision and Leadership Awards were developed by Haemophilia Foundation Australia (HFA) five years ago to enable people who are affected by a bleeding disorder to seek and achieve new goals in their lives. The Awards program is funded by an education grant from Pfizer Australia.

Who can apply?
People affected by haemophilia, von Willebrand disorder and other rare inherited bleeding disorders of all ages living in Australia are eligible to apply. This is a chance for you to do something you have always wanted, but not had the financial capacity to achieve.

What is it for?
It might be for an education activity or special project to enhance your personal development or career, or to attend a conference or program to enhance or develop new skills for leadership and participation in the bleeding disorders community.

Applications must be received by HFA by 31 August 2011 by email, post or fax to:

Haemophilia Foundation Australia
1624 High St, Glen Iris VIC 3146
F: 03 9885 1800
E: hfaust@haemophilia.org.au

Download a PDF of the application form or an editable MS Word application form below.

World Hepatitis Day

Thu, 28 Jul 2011 10:36:21 +1000

Today World Hepatitis Day is celebrated worldwide. World Hepatitis Day is an opportunity for people around the world to raise awareness about viral hepatitis and good liver health, reduce stigma and encourage access to testing and treatment.

Why is viral hepatitis important?

“I still feel like an outcast - some of my teachers and friends discriminated against me when I was at school because of my haemophilia and then when my parents were told I had hepatitis some teachers were pretty bad about it - so now I don’t tell very many people at work about the hepatitis if I can get away with it, and luckily I am not sick, but they can see my haemophilia.”

1 in 12 people worldwide live with viral hepatitis and experience not only significant health problems but also stigma and discrimination. In Australia some people with bleeding disorders acquired hepatitis C through their clotting factor treatments before hepatitis C testing and viral inactivation processes were introduced in 1990. Although some have cleared hepatitis C from their blood naturally or through treatment, others continue to live with the virus.

In 2010 there was a World Health Organisation resolution to celebrate World Hepatitis Day globally on 28 July and take global co-ordinated action to tackle viral hepatitis.

We invite you to join us and take action today – participate in World Hepatitis Day and support affected people with bleeding disorders and other affected people throughout the world.

What can you do to participate in World Hepatitis Day?

Find out more about hepatitis C and why it matters to people with bleeding disorders – Hep C – what is it all about?

Go to www.loveyourliver.com.au and

Learn about good liver health and how to reduce stigma related to viral hepatitis
Download some delicious liver-friendly recipes
Get involved and consider hosting a Love Your Liver Lunch
Check with your state or territory hepatitis council for local events and lunches – www.hepatitisaustralia.com.au

Find out more about the World Hepatitis Alliance and the global campaign - www.worldhepatitisalliance.org

For more information about the national Love Your Liver Lunch campaign, go to the web site - www.loveyourliver.com.au.

Help men ageing with haemophilia

Tue, 14 Jun 2011 13:06:54 +1000

Make a donation before June 30 and help support men who are facing complex health problems as they are ageing with haemophilia.

People with haemophilia are living longer. As a result, there are a growing group of men facing challenges we have not had to deal with before. They face complex health problems as a result of growing up and ageing with haemophilia — problems that are affecting men from as young as 30.

With your support to raise $63,400 by the end of the financial year, Haemophilia Foundation Australia can ensure all men ageing with haemophilia have access to specialised education programs about physical and emotional wellbeing; peer support opportunities and information resources to help them improve their health outcomes.

Click here to donate and show your support today.

Erl Roberts shares the challenges of growing up and older with severe haemophilia.

When Erl was born there were no transfusions available for haemophilia. His older brother also had haemophilia, but died because of a bleeding episode when he was five years old.

By the time Erl was growing up, whole blood and fresh frozen plasma became available for treatment, which helped people to survive bleeding episodes but did not stop the swelling and the pain.

Repeated bleeds into his muscles and joints caused permanent problems for Erl—shortening of the tendons in the back of his leg requiring an operation to treat it, arthritis in his joints, severe stiffness and difficulty moving.

Most of Erl’s joints have been affected by arthritis caused by haemophilia and he has a serious reduction in joint movement.

He has had a heart attack and undergone bypass surgery, had two knee replacements, a hip replacement and a shoulder replacement and has severe arthritis in his elbows.

Because of this there are many things he can’t do that others would take for granted - gardening, mowing the lawn, bending down to get things out of a cupboard, getting up a ladder, changing a light bulb, putting his socks on, putting a jacket on or having a soak in the bath.

Please make a donation today and help men like Erl who are facing complex health problems as they are ageing with haemophilia.

Your donation can help ensure all men ageing with haemophilia have access to specialised education programs about physical and emotional wellbeing; peer support opportunities and information resources to help them improve their health outcomes.

Click here to donate now