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From Shanghai to Dublin on bicycles for haemochromatosis

Thursday, 09 August 2012 00:00

"Two continents, 19 countries, 13,000+ kilometres and loads of fun!”

Bishkek, KYRGYZSTAN – Ben Shuker, a young Australian adventurer from Brisbane and his American friend Brendan Kay from Chicago are on a rest day, 3 countries, 5,500km and two and a half months into a bicycle ride from Shanghai to Dublin to raise awareness and money for hemochromatosis (inherited iron overload disorder) , the most common genetic disease in Australia and the U.S.A. Ben, 24, studied architecture in Brisbane before setting off to China where he has lived for the past few years, teaching English and travelling extensively. In fact Ben has already achieved one of his travel goals – seeing all seven wonders of the world.

"I am passionate about people, culture and outdoor activities. I had never done any bicycle travelling before in my life so this is a new challenge that I am enjoying as much as I am learning" said Ben.

Ben estimates that it will take six months to complete the ride across two continents and 19 countries, including side trips. They chose to end their ride in Dublin for three reasons. Ireland is one of the farthest points in Europe from China; they both have always wanted to see Ireland and Ireland has the highest proportion of people with haemochromatosis in the world. Their route will take them through China, Kyrgyzstan, Kazakhstan, Azerbaijan, Georgia, Turkey, Bulgaria, Romania, Hungary, Croatia, Slovenia, Austria, Slovakia, Czech Republic, Germany, Belgium, England, and Ireland. They hope to ride 100 km per day, six days a week. Ben and Brendan are funding the trip themselves, but are seeking corporate sponsorship to help cover some of the cost.

They met while they were both working in Shanghai. Their shared love of travel and adventure soon saw them become good friends and travel companions. Not long after they met, Brendan learned that a much loved uncle back in the States had fallen ill as a result of undiagnosed haemochromatosis. The disorder which can cause excess iron to be absorbed from food, affects about one in 200 people in Australia and the USA. Though often misdiagnosed, haemochromatosis can be effectively treated by lowering the level of iron by periodically removing blood from the affected person. If diagnosed late, haemochromatosis can be fatal. . “Haemochromatosis is a disease neither of us had heard of before’ said Ben. ‘After looking into it and realizing there is a lack of international awareness, we agreed it was a great cause for us to do what we can to raise awareness. Haemochromatosis Australia and the American Haemochromatosis Society are doing great work and we thought we could help their efforts. Australia will have its first Haemochromatosis Awareness Week from 13 – 19 August. We would love people to see this story and think about what they can do to help raise awareness too.’

Ben’s biggest challenge in making the cross-continent bike trip? “Staying on track. There are so many amazing places we are going to see, but also so many just off our path.” he said.

Ben and Brendan are blogging about their adventure at http://shanghai-dublin.tumblr.com. For information about hereditary haemochromatosis, or to make a donation to the Haemochromatosis Australia, visit www.haemochromatosis.org.au.

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Images
A high-resolution copyright-free image of Ben and Brendan is China “Brendan and Ben at Tianchi (Heavenly Lake), Xinjiang, China” can be downloaded from www.haemochromatosis.org.au/assets/images/BEN_brendan_tianchi.jpg

Contact
Media contact: Tony Moorhead, Haemochromatosis Australia, 07 5438 8267, This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Ben Shuker This e-mail address is being protected from spambots. You need JavaScript enabled to view it (Contact can be patchy due to their location and access to internet).

Haemochromatosis Australia President, Ben Marris 03 6267 4787
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

For more information about haemochromatosis or Haemochromatosis Australia visit www.haemochromatosis.org.au

Haemochromatosis Australia
Haemochromatosis Australia is the support, health promotion and advocacy group for people with haemochromatosis and their families. The group has operated continuously for 22 years.

• It is a not for profit group run entirely by volunteers.
• It has over 1400 members across Australia.
• It operates an Information line 1300 019 028 and informative website.
• It publishes two informative booklets and a quarterly newsletter.
• It organises local support group and information sessions.

The groups medical advisors include some of the leading academics and clinicians in the field of haemochromatosis, including -
Prof Emeritus Lawrie Powell, Prof John Olynyk, Prof Martin Delatycki, Prof Darrell Crawford, Prof Katie Allen
For more information www.haemochromatosis.org,au

Haemochromatosis
Haemochromatosis, or inherited iron overload disorder, is the most common genetic disorder in Australia. It causes the body to absorb excess iron which builds up in the organs and joints over many years and eventually becomes toxic.

Early symptoms include joint pains, fatigue, weakness and sexual dysfunction.

If untreated it can lead to serious and potentially fatal symptoms including diabetes, liver cancer and cirrhosis, heart failure and osteoarthritis.
Despite being so common (one in 200 have the genetic pre-disposition) it is not well known and is frequently overlooked. Often only the individual symptoms are treated and the underlying cause is not recognised.

Tests for the condition are simple and cheap. If iron studies show raised ferritin on two occasions, or if a first degree relative is diagnosed, then then a genetic test is covered by Medicare.

If people are diagnosed early and treated then haemochromatosis is no barrier to a normal healthy life.

Treatment is simple, drug free and uncontroversial. Regular venesection, like giving blood at a blood bank, unloads iron. Often this can be done at the Red Cross Blood Service and the blood is useful.

Perhaps, if the condition needed pharmaceutical treatment, it would be better known.

Haemochromatosis Week
The inaugural Australian Haemochromatosis Week will be held from 13th to 19th August 2012. The purpose of the week is to raise community awareness of the condition and thus improve the rate of early diagnosis.

The week will be launched at a public meeting at Parramatta Town Hall on Saturday 11th August where Professor Jacob George, Professor of Gastroenterology and Hepatic Medicine at Westmead Clinical School, will give a public talk on the condition.

There will be public information meetings in Melbourne, Adelaide, Perth, Brisbane, Port Macquarie and on the Sunshine and Gold Coasts.
A special art exhibition in Hobart titled “Overload” will feature haemochromatosis.

Radio, television and print media will raise awareness of the condition.

There will also be a poster campaign and a variety of local displays and activities initiated by the 1400 members of Haemochromatosis Australia.