www.ha.org.au Haemochromatosis Info Line 1300 019 028

newsIron AgeIssue 98 – October 2017

What’s InsideMember profile 3–4

Awareness Week Highlights 4–5

Sydney Events 6

New membership committee 6

Reminder to renew your membership 6

The OVERLOAD collection 7

The OVERLOAD collection order form 8

continued, page 2

We have commissioned a limited collection of exquiste hand-made

wearable art by Australian artist MO.

For further details see page 7 or order online www.ha.org.au/shop/

Your support makes our support for people affected by hereditary haemochromatosis possible

Xmasidea The OVERLOAD Collection

This article is based on a presentation to the 2016 Australasian Haemochromatosis Conference in Brisbane by Dr Barbara Bell, Donor Vigilance and Clinical Research Manager, Australian Red Cross Blood Service. We also acknowledge the assistance of Dr Helen Ingham, Lead Medical Officer (SA/NT), Australian Red Cross Blood Service.

Australia is fortunate to have this service available. The Blood Services in many other countries with a high proportion of people at risk of iron overload do not offer such a universal service.

The Canadian Blood Service does offer a similar service. In the UK, patients who have finished the intensive phase of de-ironing and are in maintenance are accepted. The Irish Blood Transfusion Service now offers a phlebotomy service for haemochromatosis at two centres in the country. The American Red Cross Blood Service does not accept donors with haemochromatosis.

Highlights• TheAustralianRedCrossBloodService(theBlood Service) provides a service to patients requiring venesection for medical reasons, including haemochromatosis. Almost all patients (more than 98 percent) referred and accepted to the therapeutic donor program have heredity haemochromatosis.• Therapeuticdonorsmustmeetalldonorsafety requirements.

• Howevertheywillnotberejectedsimplybecausethey do not meet some of the normal voluntary donor eligibility criteria, for example, living in the UK. Therapeutic donors whose blood is not suitable for clinical use are accepted and the blood collected is discarded or used for non-clinical supply.• Thepatientmustbereferredtothetherapeuticdonor program by their own doctor using the online High Ferritin App.

Therapeutic blood donationsThe Australian Red Cross Blood Service provides a service to patients requiring venesection for medical reasons, including haemochromatosis. It is evident from calls to our InfoLine 1300 019 028 that the existence of the program, the eligibility guidelines and referral processes are not universally known and understood by everyone with haemochromatosis or their medical practitioners. There are many misconceptions about eligibility and what happens to the blood that is collected.

Haemochromatosis Vice-President Desma Wieringa giving a therapeutic donation at the Australian Red Cross Blood Service

Iron Age news2

continued from page 1

• Themajorityofbloodcollectedfrompeopleinthe program (80 percent) is used for clinical purposes in blood products and saves lives.

Therapeutic DonorsThe Blood Service will accept people requiring venesection for medical reasons on evidence based best practice and referred by their doctors using the online High Ferritin App. Patients with hereditary haemochromatosis who are verified C282Y homozygous or C282Y / H63D compound heterozygous are accepted.

People with porphyria cutanea tarda or polycythaiemia vera are also accepted.

The Blood Service will also accept people with proven ‘gene negative’ haemochromatosis. They must have evidence of iron overload or liver biopsy or ferriscan provided by their doctor for review before being accepted.

This does not mean people with genetic markers for haemochromatosis who are not C282Y homozygous or compound heterozygous or people with high ferritin who do not have genetic haemochromatosis cannot donate. As long as they are fit and well and meet all the normal eligibility criteria, they can become voluntary donors. There are forms available on the High Ferritin App website for their doctor to complete verifying they are suitable as donors.

Donor safety requirementsNot everyone with hereditary haemochromatosis requiring venesections can be accepted to the program. The Blood Service cannot accept patients who do not meet their donor safety requirements.

Donor selection criteria are stringent in order to protect donors and potential recipients from harm.

Patients must be fit and well enough to have venesection in a non-medical supervised facility. For these reasons, the Blood Service cannot accept people with significant vascular disease especially arrhythmias, poorly controlled diabetes or other medical conditions that increase their risk from venesections.

Individuals who have HIV, hepatitis B or hepatitis C are permanently ineligible to undergo therapeutic venesection.

All donors, even those who have donated regularly for many years, are required to undergo the same screening process at every donation:• Donorquestionnaire• Donorinterview(includingweight,capillaryhaemoglobin check, blood pressure and pulse)• Infectiousdiseasescreeningtests

If donors are ineligible for safety reasons to donate at the Blood Service, there are alternative providers who can perform venesection where one to one medical supervision of the procedure is possible.

AccessDonor Centres are located in all capital cities and many regional centres. The Blood Service also operates mobile collection centres that service other areas on a rotation basis. Unfortunately, some people in regional and remote locations cannot travel to a Blood Service Donor Centre or must travel

long distances. Wait times at donor centres and operating hours can exclude some working people. Some Donor Centres in larger centres operate on weekends. Check the Donate Blood website for opening hours and locations of Donor Centres.

Once accepted, the Blood Service assesses whether the blood can be usedBlood that cannot be used for clinical purposes is discarded. However the fact that their blood cannot be used will not by itself, exclude anyone from the therapeutic donor program. People who were living in the UK between 1980 and 1996 can donate but their blood is discarded. Also certain drugs make the blood unsuitable for use. Where they can, they will at least try to use the plasma component of the blood and they will try to tell donors what happened to their blood so they can choose to go elsewhere for venesections if they prefer.

Blood collected from those people fortunate to meet the safety guidelines and who live in an area where they can donate at a Blood Service collection centre forms an important component of the national blood supply. Currently the Blood Service uses 80 percent of the blood donated by therapeutic donors to manufacture red blood cells and other blood components. In 2015, 13,585 therapeutic donors with haemochromatosis provided 38,000 donations which went on to full clinical use and a further 1,200 donations were used for plasma only. That is more than 5 percent of the total blood for clinical use.

High Ferritin AppTherapeutic donors must be referred to the program by their doctor using the High Ferritin App. The eligibility screening processes built into the App mean that all referrals now comply with evidence based best practice. Referring doctors know immediately whether their patient is accepted to the program. Patients referred through the App are contacted by the Blood Service within 2 working days of referral. Information is available to support doctors whose patients are ineligible. Six and a half thousand doctors are now registered with the App.

Before the introduction of the App, almost a third of referrals were for patients whose genotype was not associated with iron overload. Paper based referrals often took a long time and valuable medical resources to process. The Blood Service has achieved $750,000 of recurrent savings per year through the successful introduction of the App.

The App ensures security and confidentiality of patient data. The App resides on a secure server within Australia and is protected by a firewall. Information contained in the App is encrypted and information relating to individual patients is only accessible to clinicians who manage those patients. The App does not message either the patient or the Blood Service with patient information. Data required for appointment-making is downloaded on a regular basis and access is protected by a username and password specifically for the donor contact team. Daily encrypted back-up of data is undertaken and securely stored off-site.

Haemochromatosis Australia would like to take this opportunity to thank all the staff of the Australian Red Cross Blood Service who provide efficient, compassionate care for patients in the therapeutic program and who make such a valuable contribution to the life-saving activities of the Blood Service.

Issue 98 – October 2017 3

Excessive iron doesn’t make you Superwoman (unfortunately)

Chantelle Franciswww.chantellefrancis.com

I was a child that never liked meat.

Maybe a party pie… but the thought of a steak on my dinner plate was repulsive. Honestly, I didn’t like vegetables either. You could say I was a difficult child.

With good reason, my parents were concerned about ensuring their child ate a balanced diet. Early on they put their foot down and made the rule… “You can’t leave your chair until your plate is clean”.

But little me had many tactics to outsmart this rule.

One of my best strategies was chewing up my steak and excusing myself for the bathroom, where I’d spit it out and flush it down.

Ten years later, much to everyone’s surprise, I was diagnosed with haemochromatosis.

Haemochromatosis is an inherited disorder that causes an overload of iron. Who knew the kid that hated eating foods with high iron would end up having too much.

Unfortunately an overload of iron isn’t a good thing. It doesn’t make you big and strong like Popeye. It makes you tired and weak.

Over time, the build up of excess iron can cause damage to tissues and organs, including the liver and heart. If left undiagnosed, the disorder can be fatal.

I was lucky, at only twenty years old, I had the disorder brought to my attention and was able to start treatment early. My Dad, however, who passed on the gene to me, spent 50 years not even knowing the disorder existed.

Haemochromatosis is Australia’s most common genetic disorder but its symptoms are relatively common health complaints, making the disorder difficult to spot.

For years I thought that I was a teenager who just really needed her sleep.

Most afternoons during year twelve I would fall asleep for hours after school, but I put it down to working my brain too hard.

On holidays, my friends would get up and head to the pool or gym in the morning while I slept in.

IthoughtIjustreallyenjoyedsleep.NowIrealisethetirednessandfatiguewasasymptomofironoverloadandIhadjustnever known any different.

What concerns me most, is iron overload flying under the radar.

Haemochromatosis affects around 1 in 200 people of northern European origin.

But while iron deficiency is commonly known, iron overload isn’t.

We asked a random selection of Deakin University students if they knew what haemochromatosis is.

To see their reactions visit YouTube http://bit.ly/2yMurDA

So how do you know if you’ve got it?

Tony Moorhead from Haemochromatosis Australia says a genetic test is the only sure way to confirm or rule out haemochromatosis.

But unfortunately, symptoms such as tiredness and weakness canleadpeopletojumptotheconclusionthatthecausemust be iron deficiency. A further concern is that some iron supplements can be bought over-the-counter without a doctor’s prescription – something I dangerously considered multiple times.

“The consequences of that mistake can be very serious since taking iron supplements in the belief that you’re treating iron deficiencywilljustaddtotheproblemiftherealcauseisoverload,” Mr Moorhead said.

“It could accelerate the rate of absorption and storage of iron in the body which could do real harm – and worsen the tiredness as well.”

Mr Moorhead says pharmacists play a key role in stopping Australians misdiagnosing and causing themselves harm.

“They can play an important role providing advice to people who have self-diagnosed or used Dr Google to come up with an answer to their problems,” he said.

While it is hard to differentiate between iron deficiency and ironoverloadjustbasedonobservablesymptoms,somepeoplewithhaemochromatosisexperiencesorejoints,unexplainedabdominal pain, sexual dysfunction and discolouration of the skin.

Haemochromatosis Australia suggests if an immediate family member is diagnosed or you are experiencing the symptoms mentioned earlier, it is worth raising the issue with your doctor.

“Haemochromatosis can have very serious consequences. But if it is detected and treated early, you can expect to lead a normal, healthy life,” Mr Moorhead explains.

continued, page 4

Chantelle Francis

Iron Age news4

Treatment is fortunately often simple and effective.

According to NOVA (www.science.org.au/curious/people-medicine/iron-overload), the most common form of treatment is venesection — ‘the removal of between 300 ml and 500 ml of blood (similar to a blood donation) via a needle in the arm’.

My father’s iron levels are too high to donate, but I’m able to donate my blood at the Australian Red Cross Blood Service www.donateblood.com.au/

They provide free therapeutic blood service, and each donation through the blood bank has the power to save three lives – it’s a win win.

This article appeared recently in Dscribe an online publication www.dscribe.net.au. The author, Chantelle Francis, contacted Haemochromatosis Australia during her research for the article. We shared the article on our Facebook page (www.facebook.com/haemochromatosis). The Facebook post proved very popular, reaching over 10,000 people, 70 shares and 171 Likes. It’s great to see young people raising awareness of haemochromatosis but sad to see in the video with the story so many of her contemporaries had never heard of haemochromatosis. If everyone at risk was diagnosed early, no one would ever have problems from iron overload. Thanks Chantelle – you are a wonder woman.

Haemochromatosis Australia

Unfortunately, excessive iron doesn’t make you superwoman.

People can go through most of their life without knowing they’re affected… until the damage is done.

If you’re interested in finding out more about haemochromatosis, you can visit Haemochromatosis Australia’s website www.ha.org.au or call the InfoLine on 1300 019 028.

Chantelle is Editor of Dscribe, and is a final-year Bachelor of Communication (Journalism) student at Deakin University. She enjoys writing hard news and the occasional lifestyle piece. She has worked with Blitz Publications, the Australian Associated Press and The Weekly Times.

continued from page 3

Why do we bother?We know that 1 in 200 Australians of European origin are at risk of iron overload from hereditary haemochromatosis.

Unfortunately, there is no reliable data on how many of those people have actually been detected so they can seek treatment and manage their condition. We do know that there are many people who don’t have a clue that they could develop potentially devastating, even life-threatening symptoms. We receive over 600 calls a year to our InfoLine. Many of those callershavejustbeendiagnosedorhaveheardsomeoneintheir family has been and they have often never heard of haemochromatosis.

I am sure many of you reading this now were the same. Sadly, a small number of callers have already suffered serious damage or debilitating symptoms of fatigue and pain.

We speak to doctors, nurses and pharmacy staff who are looking for reliable information resources they can provide to patients or customers. Once people are detected, they can monitor their iron levels and prevent harm from occurring.

They can alert their families so that immediate family members who are most at risk can be tested and others will be aware the gene is in the family line.

That’s why, with your support, we seek to raise the profile of haemochromatosis in our community.

What did we do?We issued media releases to hundreds of mainstream media outlets across the nation. It’s very difficult to break into mainstream print media but we keep trying.

We collaborated with Bunnings Hardware to raise awareness among their staff and customers. We supplied them with brochures that were distributed to staff at their 300 stores, displayed on notice boards and discussed at staff meetings.

Our volunteers manned information displays at a variety of stores on weekends during Awareness Week. (Thanks to all of those volunteers. It seemed to be pretty cold and blustery weather for most displays but you soldiered on.)

Haemochromatosis Awareness Week

This year we worked to focus attention on haemochromatosis during the annual Awareness Week. We used a variety of strategies in a concentrated effort to reach as many people in the general community, media and medical and health professions as possible.

continued, page 5

HaemochromatosisAwareness Week

7 - 13 August 2017

Are you pumpingtoo much iron?

www.ha.org.au1300 019 028

Issue 98 – October 2017 5

We were quite successful placing articles in a number of magazines and industry publications and radio stations:

• Tony Marshall featured in an article in That’s Life magazine

• An article in In the Know,thejournalofGoldCrossforpharmacists

• A full-page article in Spanner in the Works, health magazine for Men’s Shed organisations

• Judi McDonald received a lot of media coverage in her region of rural Victoria

• ABC Radio stations interviewed Sheila Stevenson twice in Tasmania, Tony Moorhead in Queensland

• We ran a series of paid advertisements on Sydney radio station 2CH

• Sutherland community radio station 2SSR ran a series of

free community announcements and an interview with our President, Di Prince

• Dan Johnstone was interviewed by 2GB• Several health related websites featured haemochromatosis

information or shared our social media messages• Various pharmacies around the country ran displays• Our Facebook and Twitter information reached a wide

online audience

Sheila Stevenson organised another successful OVERLOAD art exhibition in northern Tasmania.

As in previous years, pharmaceutical distributor DHL helped us by sending out Awareness Week messages to hundreds of pharmacies through their weekly Fax Blast.

Thanks to everyone who contributed to the successful week.

Linda Rule at Bunnings Warehouse, Maroochydore where she and Tony Moorhead ran a stall

The Haemochromatosis Australia race-car added some fun at Judi McDonald’s stand at Bunnings Warehouse, Yarrawonga

Tony Marshall at Bunnings Warehouse, Wollongong

Bev Hamer at Bunnings Warehouse, Maryborough

Di Prince being interviewed at radio station 2SSR Kate Barnett, Sheila Stevenson, Hon Guy Barnett MP at launch of OVERLOAD Deloraine

Di Prince manned stalls at two Bunnings Warehouses, Kirrawee and East Gardens (pictured here at Kirrawee)

Various pharmacies ran displays

Sheila Stevenson at Bunnings Warehouse, Launceston

A snapshot of Haemochromatosis Awareness Week 2017 …

continued from page 4

Iron Age news6

continued from page 5

Sydney Haemochromatosis EventsOn Saturday 26 August we held three events at Club on East, Sutherland NSW. It was a busy weekend for our committee members who also met on Saturday morning for our annual face-to-face committee planning and review session.

Information SessionAbout 40 people attended a public haemochromatosis information session during the afternoon. We had advertised extensively in local media before the event, displayed posters on notice boards and shop windows and invited all of our Sydney members to attend.

Four distinguished invited guests gave presentations to the meeting and answered questions from the audience.

• Professor Jacob George of Westmead Hospital spoke on causes and symptoms of haemochromatosis

• Dr Adrian Sartoretto of The Infusion Clinic, Randwick spoke about genetics and treatment

• Dr Helen Ingham, Medical Officer from the Australian Red Cross Blood Service explained the Blood Service’s Therapeutic Donor Program

• Dr Daniel Wallace from Queensland University of Technology talked about recent research including the QUT’s current Haemochromatosis and Chronic venous Disease / Leg Ulcers survey.

Annual General MeetingYou can view a copy of the minutes of the AGM and the financial statements for 2016/2017 year on our website at www.ha.org.au/about-us

Election of 2017/18 Management CommitteeThe election of Haemochromatosis Australia’s management committee took place at the Annual General Meeting. Dianne Prince was re-elected President. Other outgoing committee members were re-elected: Desma Wieringa (Vice-President), James Stephenson (Treasurer), Tony Moorhead (Secretary) and Dan Johnstone and Linda Rule as committee members.

Karin Calford stepped down after seven years on the committee. Not content with tirelessly working to get HealthPathways adopted across Australia, Karin took on the task of ensuring Haemochromatosis Australia is ever present in the social media world. Karin’s understanding of primary healthcare and her connectedness to health professionals and researchers has helped us forge strong relationships within the

medical community and she has also provided support for Volunteer Advocates in recent years. Thank you Karin, you will be missed.

ElizabethMcCrayjoinsthemanagementcommitteeforthefirst time. She worked as a Volunteer Advocate for the past year and assisted with the production of the newsletter and Annual Report. We welcome Elizabeth and look forward to benefiting from her enthusiasm and ideas. She takes over Karin’s role in the twittersphere!

Comedy Fund-Raising NightOver 70 friends and supporters attended a comedy night at the club. Four top-notch comedians entertained the crowd and had us laughing until it hurt. The evening helped raise much-need funds for our support and awareness activities.

We would like to thank Comedy for a Cause, who organise fund-raising comedy nights for schools and charities like ours. Theydidaveryprofessionaljobstagingtheeventandsourcingsome incredible talent. Thanks to the comedy line-up – James Smith, Matt Wakefield, Sam Bowring and Umit Bali – all very talented and funny comedians. Thanks also to Club on East Sutherland and their staff for a wonderful venue and help with all the events.

Have you renewed your membership?

Those members whose annual subscription is due will have received a letter or email by now. You can still renew by returning the letter with payment, selecting the link in the email to pay online or calling our InfoLine 1300 019 028.

Your support is vital to our operations. We are a volunteer run organisation reliant on membership and donations for funding.

Haemochromatosis Australia’s annual face-to-face committee planning and reveiw session L-R: Tony Moorhead, Linda Rule, Dan Johnstone, Karin Calford, Desma Wieringa, Elizabeth McCray, Di Prince

Karin Calford

Sam Bowring entertaining the audience at the Comedy for a Cause fund-raising night

Issue 98 – October 2017 7

The OVERLOAD Collection

We would love to hear your story and share it with our readers. It could be about your path to diagnosis, your thoughts on haemochromatosis or how it impacts your life. If you wish, we will publish it without identifying you. We can also help edit and polish up your story if you don’t feel confident about your writing abilities. It’s your story that’s important, not your style.

Email admin@ha.org.au or write to us at PO Box 6185 MERIDAN PLAINS QLD 4551.

Share your story

We have teamed recently with French born Australian artist MO to design and produce a limited collection of hand-made wearableartavailablejustintimeforthefestiveseason.

Ourhopeisthatthisjewellerywillhelpraiseawarenessofhaemochromatosis within the community.

Haemochromatosis is the most common genetic disorder in Australia affecting 1 in 200 people with northern European backgrounds.

Each item is a piece of art from the heart ...

All proceeds from sales go towards supporting Haemochromatosis Australia

How to order

Online: www.ha.org.au/shop/

Telephone: call the InfoLine 1300 019 028 during business hours and use your credit card

Mail: complete and post the order form on the back of this newsletter to: Haemochromatosis Australia, PO BOX 6185, MERIDAN PLAINS QLD 4551

*Be quick as availability is limited*

Resin blood drop brooch$40.00

Resin blood drop cuff (bracelet) which comes in two sizes –

small and large$55.00

Resin blood drop cufflinks $50.00

Resin blood drop earrings made from quality

sterling silver$50.00

Resin blood drop pendant$55.00

Resin blood drop lapel or tie pin$25.00

perfect Xmas gift

Flat rate of postage $9.95 (Australia-wide)

Iron Age News8 Issue 96 – April 2017

Medical and Scientific AdvisorsProfessor Lawrie Powell AC MD PhDProfessor Emeritus, The University of Queensland, BrisbaneProfessor John Olynyk Professor of Translational Medicine Head of Gastroenterology & Hepatology, Fiona Stanley and Fremantle Hospitals Director Research Development, South Metropolitan Health Service, Western AustraliaProfessor Martin Delatycki Medical Director, Victorian Clinical Genetics Services, Director, Bruce Lefroy Centre for Genetic Health ResearchMurdoch Childrens Research Institute, Melbourne Professor Katie Allen Director, Population Health, Murdoch Childrens Research Institute, MelbourneProfessor Darrell CrawfordHead, Discipline of Medicine, The University of Queensland, BrisbaneProfessor Greg AndersonCo-ordinator, Chronic Disorders Program, Head, Iron Metabolism Laboratory, QIMR Berghofer Medical Research Institute, BrisbaneDr Katie Goot MBBS BSc FACRRM

DISCLAIMER: The use of information in this newsletter is at your own risk. While every effort is made to ensure that the information is accurate and current, it is only intended as a guide and not as a substitute for professional medical advice. Before relying on anything you see in this newsletter, you should consult with your doctor or health-care professional, or, if appropriate, obtain some other form of independent verification as to accuracy and completeness.

Contact UsHaemochromatosis Australia

We are a not for profit support and advocacy group run entirely by volunteers. This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

Find out more, join us or donate at our websitewww.ha.org.au

Call our Information Line: 1300 019 028Write to us: PO Box 6185 Meridan Plains QLD 4551

Email: feedback@ha.org.auPresident: Di Prince

dianne.prince@ha.org.auVice President: Desma Wieringa

desma.wieringa@ha.org.au

Payment detailsI wish to pay by credit card cheque or money order (make cheques payable to “HAEMSOC”)

Please charge my Mastercard Visa

Card No.

Expiry ___/___ Signature _______________________________________________________

Post this form to Haemochromatosis Australia PO BOX 6185 MERIDAN PLAINS QLD 4551

City State PostcodeEmail Phone (Home) Work Mobile

Title Mr/Mrs/Ms/Miss/other:

First nameLast nameAddress

Shipping address

Product Price Quantity SubtotalBrooch $40.00Cuff (large) $55.00Cuff (small) $55.00Cufflinks $50.00Earrings $50.00Pendant $55.00Pin $25.00

TotalShippingDonationGrand Total

$9.95Haemochromatosis Australia The OVERLOAD Collection

order form