Haemochromatosis Awareness Week runs from 11 – 17 August this year.
It’s a time to focus attention on haemochromatosis and for people like you and me to raise awareness of the condition in the community.
Why do we need to do that?
Because haemochromatosis is still diagnosed far too late for many people. Others struggle for years with unexplained symptoms while the condition is overlooked.
Because every person diagnosed in good time potentially represents a lot of pain and suffering avoided.
Because people born with the most common genetic condition in Australia need to know how common it is – that they’re not alone and it is a completely manageable condition that should not affect their quality of life.
So how can you raise awareness of haemochromatosis?
You don’t need to get out there and wave a placard or storm the barricades – although feel free if you think it will help.
Here are three simple things you can do personally to raise awareness of haemochromatosis.
1 Support Haemochromatosis Australia
Join us on our journey to achieve our vision that
‘No Australian will suffer harm from haemochromatosis’.
For just $40 a year ($25 for concession card holders) you can become one of the growing number of people who have banded together to support people with haemochromatosis and raise awareness of the condition. The more members we have, the more seriously people will take us. We have nearly 1500 members now around Australia. With double that number we could take on the world!
All of our operational costs are funded by membership subscriptions or donations. While we have been fortunate to secure a grant to host the first Australian Haemochromatosis Conference in 2014, we receive no government funding to run our day to day work. As we grow and reach out to more people, our costs increase. We spend the money wisely and carefully. We have no paid employees – everything is done by unpaid volunteers. We have no office overheads. But phone, postage, technology and printing costs are soaring as demand for our services increases.
You can join us as you read this – just click here. It’s that easy. And we’ll post you our welcome kit with useful information and our quarterly newsletter.
If you don’t feel you can commit to joining us, you can make a one-off donation here.
2 Talk about haemochromatosis
Tell your family especially so they understand they are at increased risk of inheriting the condition and need to be tested.
Tell your friends. Tell your neighbours and work-mates.
You don’t need to stand on a sop-box on a street corner. Just bring it up in conversation. All we want to do is normalise the condition, so people understand what it is, how common it is and the danger signs they need to consider. Believe it or not, your friends and colleagues will probably be interested. Tell them you’re an ironwoman or ironman.
Share this blog post with your online friends. Share our Facebook page. Tweet about Haemochromatosis Awareness Week. Tell your story on YouTube. Instagram it if you like.
Let’s spread the word!
3 Little actions make great changes
Just supporting Haemochromatosis Australia and talking about haemochromatosis will make a change.
But there are other things you can do too.
Get out there and do something simple.
Put up a poster about hemochromatosis on your notice board at work, your club, local library or your medical clinic or pharmacy (better ask permission first).
Leave some haemochromatosis brochures at your GP or pharmacy.
Here are some resources you can download or link to from your website or blog.
We also have some great videos on our YouTube channel.
We have free haemochromatosis resource kits available. You could set up a display with posters, haemochromatosis brochures and booklets, balloons and DVD with our videos to play.
To order a resource kit, posters or brochures, email firstname.lastname@example.org
Give a talk about haemochromatosis to your social club.
Talk about haemochromatosis to your local politicians.
There are lots of little things you can do.
Go on, you know better than me.