Haemophilia Foundation Australia

Happy ! Did you know haemophilia A is the most common inherited bleeding disorder in cats? Affected cats may show prolonged bleeding after surgery or injury but rarely bleed spontaneously, probably because of their agility and light weight. 🐈

👀 Have you checked your inbox today?

HFA’s latest newsletter is fresh off the press. This month we highlight:

📺 New video: haemophilia inheritance in males
🎈 Bleeding Disorders Awareness Month promo items
🐉 Body art – tattoos and piercings
👩 Women: caregivers to patients to advocates
📣 Research opportunities

Not subscribed? Read it online here: https://tinyurl.com/hfa-newsletter-aug-2024

"I work in a large office. It’s not dangerous work. I don’t have a risk of injury due to tools, danger, hazards. I don’t need to wear protective equipment. But one day, I left the office in an ambulance."

Susie tells her story of how an unexpected fall at work showed her the value of being open and speaking about her bleeding disorder.

https://tinyurl.com/susie-disclosure-vwd

VWD affects men and women equally, and is the most common inherited bleeding disorder worldwide. Learn more: https://www.haemophilia.org.au/vwd

Do you have VWD? Are you interested in contributing to an international research study about what it is like to live with VWD?

Haemnet's vWD360 study aims to gain a greater understanding of vWD and how it affects the everyday lives of you and your family.

It involves an online survey and an optional in-depth interview and bleeds diary. You will be reimbursed for your time.

Visit the HFA social research page for more information - https://tinyurl.com/pwbd-social-research

Adam is in his late 40s and has Type 3 von Willebrand disease (VWD), which is a severe form. He has almost no von Willebrand factor in his blood and his factor VIII (8) levels are also low.

Adam has always been active and has learned over time how to reduce the likelihood of bleeds and manage bleeds that occur.

Find out how control over his treatment by learning to self-infuse gave Adam independence: https://tinyurl.com/adam-living-with-vwd

1 in 20 kids have a genetic health condition, including inherited bleeding disorders – and other conditions that can be life-threatening, like cancer, cystic fibrosis, and life-threatening metabolic disorders. That's 12 kids born every minute worldwide.

Today is Jeans for Genes Day. We’re supporting the Children’s Medical Research Institute (CMRI) to find treatments and cures. You can too – find out more here: https://www.cmrijeansforgenes.org.au/

Two types of gene therapy have been used in human clinical trials to treat haemophilia:

🧬 Introducing a new functional gene
✂️ Gene editing

While gene editing is still in the clinical trials phase, some therapies that introduce a new functional gene have been approved in some countries, and are currently going through the approval process in Australia.

Learn more: https://www.haemophilia.org.au/gene-therapy

Bleeding Disorders Awareness Month is coming up fast! Are you planning an event this October to help raise awareness? Order your promo items now to ensure you don’t miss out.

🖊️ Pens
🎈 Balloons
📄 Activity Sheets
🚗 Toy cars

… And much more!

https://tinyurl.com/bdam24-order-form

💚💙💜 Today is International Day of Friendship. We love this pic from the HFQ Men's Support Group Lunch. It was very upbeat and lots of conversations, laughter and support within the group. Thank you to the Haemophilia Foundation Queensland Secretary, Tony for hosting.

Local Foundation events are a wonderful way to connect with the community while engaging in a fun activity. From family camps to lunches to casual meet-ups, contact your Foundation to see what’s on next.

https://www.haemophilia.org.au/support-services/state-territory-foundations/

📞 What mental health support services are available and how do you access them?

In the March issue of National Haemophilia, Nicoletta Crollini, Haemophilia Social Worker, reminds us that the bleeding disorder community is not exempt from dealing with mental health issues. She provides guidance on what mental health supports are available, and how to go about accessing them.

https://tinyurl.com/nh225-mentalhealth

It’s World Hepatitis Day.

It’s time for action on liver health.

How can you keep your liver healthy?

Your liver has a lot of different jobs to do to keep your body working well.

To keep your liver in good shape so that it can do what it needs to:

Have a balanced diet
Stay active and maintain a healthy weight
Avoid or minimise alcohol intake
Take care of your mental health and wellbeing
Ask your doctor if you need liver health monitoring.

Find out more - https://tinyurl.com/keeping-your-liver-healthy

for Hepatitis Australia

Today is World Hepatitis Day.

This World Hepatitis Day it’s time for action.

Many people in Australia don’t know that they have hep C. Or they may have been cured but still need follow-up for their liver health, especially if they have cirrhosis or extensive liver scarring.

Do you think this might be you? Or someone you know?

DON’T PUT IT OFF

Do you know your hep C status? Find out if you don’t know.
Hep C can be cured. Treatment is simple.

Do you need liver health monitoring? Ask your doctor.
A healthy liver is vital for all of us.

To find out more, check out our World Hepatitis Day page. Share it with your family and friends.
https://www.haemophilia.org.au/world-hep-day

for Hepatitis Australia

Australia glows green

In 2024 Australian landmarks are invited to glow green on 28 July to raise awareness about eliminating viral hepatitis by 2030.

Many people in the bleeding disorders community have been affected by hepatitis C. Help us raise awareness about viral hepatitis, the importance of hep C testing and treatment and recognise the impact of hep C on our community

Look out for glow green locations on the World Hepatitis Day website – https://www.worldhepatitisday.org.au/
australia_glows_green_event

for Hepatitis Australia

Q: Can I have gene therapy if I’ve had hep C?

A: Yes, as long as you have been cured or you are HCV PCR negative (no active virus in your blood) and your liver is showing signs that it is functioning normally. Talk to your doctor about this and they may refer you to a liver specialist for a liver assessment with an ultrasound, and blood tests to show that your liver is healthy.

There are things you can do to prepare your liver for gene therapy.

Fatty (steatotic) liver disease is a worldwide problem. Strategies to help with this are to have a healthy balanced diet, reduce your weight if you are overweight, moderate your alcohol intake and be as active as you can.

Another strategy is to avoid medications that are slightly toxic to your liver where possible – let your doctor know you are trying to keep an eye on your liver and ask them about medication options.

For more information, visit our Keeping your liver healthy page - https://tinyurl.com/keeping-your-liver-healthy

for Hepatitis Australia

'Make the effort to have treatment and follow up on your cirrhosis. Life’s too short to take chances.'

Jake has mild haemophilia. He talks about hep C, being cured, dealing with cirrhosis and looking after his liver health into the future.

Find out more on our World Hepatitis Day page.
https://www.haemophilia.org.au/world-hep-day

for Hepatitis Australia

You've been cured of hep C!
Has your liver recovered?

You might think it’s all OK, but it's easy to miss symptoms of liver disease. It’s a temptation to put your liver health out of your mind once you are cured.

But if you don't know the state of your liver health when you were cured, find out today. Ignoring your liver health can have serious consequences.

Take action now. Contact your hepatitis doctor or your GP to check your liver test results. Ask them if you need ongoing follow-up with a liver specialist.

For example, if you have cirrhosis or extensive liver scarring and are cured, you will still need a liver ultrasound scan every 6 months long-term.

Find out more on our World Hepatitis Day page.
https://www.haemophilia.org.au/world-hep-day

for Hepatitis Australia

Hep C and World Hepatitis Day - Haemophilia Foundation Australia Information about key issues relating to hepatitis C and liver health for people with bleeding disorders: who is at risk of hep C, being cured, ongoing care of your liver health, particularly with cirrhosis. Includes links to personal stories.

'I had probably had hepatitis C for about 20 years, but I wasn’t aware that I had symptoms. I had some fatigue, but I thought that was just getting older and being tired from work.'

Mary Jane has VWD and never thought of herself as being at risk of hep C. But growing up, she had the plasma-derived treatment product cryoprecipitate to control her bleeding. New safety measures to inactivate viruses in these treatment products were introduced by the early 1990s, but unknowingly Mary Jane had already been infected.

Read her story of hep C diagnosis, treatment and cure - https://www.haemophilia.org.au/news/women-can-have-hep-c-too-mary-janes-story/

for Hepatitis Australia

World Hepatitis Day is coming up on 28 July 2024.

This World Hepatitis Day it’s time for action.

Many people in Australia don’t know that they have hep C. Or they may have been cured but still need follow-up for their liver health, especially if they have cirrhosis or extensive liver scarring.

Do you think this might be you? Or someone you know?

Don’t put it off! Know your risk for hep C and your hep C status. Seek treatment to cure hep C. And check if you need ongoing follow-up for your liver health even if you are cured.

To find out more, check out our World Hepatitis Day page. Share it with your family and friends.
https://www.haemophilia.org.au/world-hep-day

for Hepatitis Australia

‘Being clear of the virus is quite amazing. The new hep C treatment was a godsend – I felt like I had won a million dollars.’

Alex has von Willebrand disease (VWD). He speaks about his journey with hep C from finding out as a boy, through several rounds of treatment and finally a cure.

Read Alex’s story - https://tinyurl.com/BD-HepC-Alex

for Hepatitis Australia

Did you know that it is estimated that 1 in 5 Australians with hepatitis C have not been diagnosed and are unaware of their infection?

For some women who carry the gene and women and men with mild haemophilia or VWD, it has been a surprise to find out they were exposed to hepatitis C, especially if they only had one or two treatments over their lifetime.

You could be at risk of hep C if you ever had clotting factor or a blood transfusion before 1993.

Is this relevant to you or someone you know?

Don’t put it off. It’s time to take action and find out your hep C status if you don’t know. It’s a free blood test that can be ordered by your GP.

Hep C can be cured. Treatment is simple.

To find out more, check out our World Hepatitis Day page. Share it with your family and friends.
https://www.haemophilia.org.au/world-hep-day

for Hepatitis Australia

Hep C and World Hepatitis Day - Haemophilia Foundation Australia Information about key issues relating to hepatitis C and liver health for people with bleeding disorders: who is at risk of hep C, being cured, ongoing care of your liver health, particularly with cirrhosis. Includes links to personal stories.

📣 From caregiver, to patient, to advocate. It’s a path that many women tread, especially those with a bleeding disorder.

❔ But where do you start?

At WFH World Congress 2024, international speakers (including HFA’s Suzanne O’Callaghan) came together to explore how to go from caregiver to patient, and from patient to advocate. And Suzanne shared insightful contributions from some of our Australian women leaders.

Lara Nicholson shares her report on the session in National Haemophilia: https://tinyurl.com/nh226-womenadvocates

🙋‍♀️ Lara Nicholson is Senior Social Worker at the Haemophilia Treatment Centre, Royal Brisbane & Women’s Hospital, Queensland.

Sharing experiences is such an important way to connect with other people with bleeding disorders. Perry, Mike, Zev and David talk about:

👴 Living with a bleeding disorder as they get older
🚀 What they would like out of life
🍎 What they have learned and tips and strategies that have worked for them

Watch the videos and read their stories here: https://tinyurl.com/goh-personal-stories

"How much prophylaxis is enough?" was the subject of a memorable session at WFH 2024 World Congress.

The session focused on the optimal dosage of prophylaxis treatment for individuals with haemophilia, highlighting the importance of this treatment in preventing bleeding episodes and joint damage.

Discussions included varying dosages and frequency of prophylaxis, emphasizing the need for tailored approaches based on individual needs.

Yuhsuan Lin (Yoshi) attended the session and shares a detailed report in National Haemophilia: https://tinyurl.com/nh226-prophylaxis

🙋‍♀️ Yuhsuan Lin (Yoshi) is Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia.

⌛ From nonfactor therapies to the development of gene therapy, haemophilia treatments have evolved a lot since the introduction of cryoprecipitate in the 1960s.

❔ Where did your journey begin, and how has your treatment changed over the years?

This infographic was adapted from 'The Evolution of Hemophilia Therapeutics: An Illustrated Review', produced by María G. Español, Jessica N. Mistretta, Michael D. Tarantino and Jonathan C. Roberts. View the full version here: https://www.rpthjournal.org/article/S2475-0379(23)05736-9/

🐠 The Haemophilia Foundation Queensland community recently got together for a huge day out at Sea World!

Local Foundation events are a wonderful way to connect with the community while engaging in a fun activity. From family camps to lunches to casual meet-ups, contact your Foundation to see what’s on next.

https://www.haemophilia.org.au/support-services/state-territory-foundations/

🖋️"Think Before You Ink" was the motto shared by Scott in his presentation on Body art – tattoos and piercings at the WFH 2024 World Congress in April.

Jaime Chase shares her perspective on the session in the latest edition of National Haemophilia: https://tinyurl.com/nh226-bodyart

🙋‍♀️ Jaime Chase is Haematology Clinical Nurse Specialist, Children’s Cancer & Haematology Service, John Hunter Children’s Hospital, Newcastle, NSW.

🧒 The question of gene therapy for children is high on the agenda for researchers, but first they need to understand the long-term impact of gene therapy in adults and how to manage safety in children.

🧬 Find out more about gene therapy for haemophilia. Visit the HFA website: https://www.haemophilia.org.au/gene-therapy