HAEMOPHILIA AWARENESS WEEK 2012 Raising awareness about achieving the dreams of people with bleeding disorders ABOUT BLEEDING DISORDERS > Chris Gordon tells the inspiring Achieving a dream story of following his passion Haemophilia What if you are passionate about playing Is a rare genetic bleeding disorder Australian Rules Football, but have severe Occurs when blood doesn’t clot properly haemophilia? How can you keep doing as there is not enough of a protein in the something you love and avoid the high blood (called factor VIII or IX) that controls impact injuries that young men often bleeding experience with football? Is usually inherited, but 1/3 of people have Chris Gordon is a remarkable young man no previous family history who has been able to balance his dreams Is incurable and can be life-threatening and the reality of having severe without treatment haemophilia. Now 23 years old, Chris is an Photo: AFL About 2,400 people in Australia have Australian Football League (AFL) umpire haemophilia and are nearly all male and studying primary school teaching. “Then a friend’s father suggested I have Women and men can carry the a go at boundary umpiring. I still felt Chris watched his first AFL game with his haemophilia gene and pass it on to their part of the game, even though I wasn’t mother at the Melbourne Cricket Ground children playing football, and I trained and was on a Friday night. on the grounds and in the rooms Some of these women also have bleeding afterwards with my mates.” problems “I was 6 years old. I knew then that I loved Treatment can help prevent repeated the game - the lights, the size of the Chris threw his energy into improving bleeding into muscles and joints, which stadium and all the people.” his skills and performance. causes arthritis and joint problems. Chris played AFL Auskick with his mates “Running, fitness and accuracy are all through primary school. He learned crucial to umpiring – you can’t make any errors.” general co-ordination and skills and played Chris has had football games regularly. “Haemophilia is not a barrier prophylaxis (preventive) Auskick is an AFL to most things in life. The treatment since he was program to introduce main thing is to give most two years old and infused his own children to Australian things a go.” Football. treatment since he was 10 or 12. But when Chris left primary school, he He has regular contact with the struck the same problem as many boys Haemophilia Centre and his high level with haemophilia. In secondary school of fitness helps him to have greater Chris umpiring at the 2011 AFL Grand Final the size and weight of boys playing Photo: AFL resilience, strong muscles to support football increases dramatically and his joints and better health. contact injuries can be much more Von Willebrand disorder (VWD) serious. His doctor at the Haemophilia What’s next for Chris? Is an inherited bleeding disorder Centre advised Chris and his parents “I’m currently training to be a primary Occurs when people do not have enough that he should stop playing AFL football school teacher – my aim is to become of a protein called von Willebrand factor because it would be too dangerous. a Physical Education teacher and in their blood or it does not work properly manage school sporting events.” Chris tried very hard to prove to his Symptoms are usually more mild than doctor and parents that it would not be a It will be a great way for Chris to haemophilia, but some people have a problem for him, but they were not share his skills with the wider more severe form convinced. community. Many people are not aware they have the disorder and are currently undiagnosed Haemophilia Foundation Australia is committed to improving treatment and Both men and women can have VWD care for the bleeding disorders community through representation, advocacy, and pass it on to their children. education and promotion of research. ACHIEVING INDEPENDENCE WITH VON WILLEBRAND DISORDER MYTH BUSTING! Myth: People with haemophilia bleed to Growing up with von Willebrand disorder (VWD) has its challenges - but as a parent death if they get cut or scratched Lyn’s aim is to make sure her children can handle it and be in control of their lives. Fact: People with haemophilia have blood She and her husband have encouraged their children to lead active lives, but to know that doesn’t clot properly so they will bleed their limits. They have all been taught how to deal with emergencies, and their friends for a longer time, but not faster than other know what to do and help out if anything happens. people. With appropriate treatment, bleeding can be prevented and will stop. “It’s always in the back of their mind, but we don’t make it a big part so they live a Minor cuts and scratches need only a band- reasonably normal life. They’ve had some long nights with blood noses where they lost aid® and some pressure at the wound. two to three hours sleep, but still got up in the morning and went to school. Now the Bleeding is mostly internal, often into older kids are going to university.” muscles, joints and sometimes organs. What does the future hold? Like most families, life for Lyn and her children is a “work in Myth: People with haemophilia cannot progress”, just with more challenges. Her daughter is working with her medical team to play sport get her severe menstrual bleeding under control with medication, while one of the boys has plans to work in a remote area, depending on the requirements. Whatever happens, Fact: Sport strengthens joints and muscles, Lyn is confident her children will handle their challenges with strength and resilience. which can prevent bleeds. Care is taken when choosing a sport, as high contact sports such as football and boxing could cause bleeds. People with haemophilia MAKING DREAMS COME TRUE learn to manage their condition and play a wide range of sports. Watching the Olympics has inspired many of us and 8-year-old Adam is no exception. The difference is that Adam has haemophilia – so making his dreams come true means he has some unusual priorities. Adam “Adam was watching the water polo in the on his Olympics and said, ‘I’d love to do that. What’s scooter that called?’” said his mother, Donna. “He loves sports with balls, like soccer, but he’s been swimming since he was a baby and especially loves anything to do with water.” Red cakes can change lives! For Donna, encouraging Adam’s ambitions involves talking to his swimming instructor It’s true. They can. That’s why HFA about how he can learn water polo. But for when he was a week old after developing is calling on our supporters to Adam, other things are more important – he an intracranial bleed at birth. The bleed left help us celebrate Haemophilia wants to have his port removed so that he him with balance problems, which he is Awareness Week by taking part in can be the same as his friends. now overcoming by being active in a range our inaugural Red Cake Day! of sports. Adam has severe haemophilia and has to It’s easy…all you have to do is bake have clotting factor concentrate injected into a “Adam is such a little fighter. Learning delicious red cakes or cupcakes, vein every two days to prevent bleeding. To to ride a scooter properly was a big decorate them, and share them with protect his veins while he was young, he had achievement for him. Now he can ride your friends or work colleagues in a device called a “port” inserted surgically into his scooter equally well with his left and exchange for a donation or a gold his chest. The clotting factor can be injected right legs - and his mates are trying to coin. straight into the port rather than into his arm. learn this from him as well.” Want your cakes to look extra special? “We are working towards having Adam’s port Donna organises “Paint the Town Red” Why not order some of our specially taken out,” explained Donna. “I’m starting by events locally in Neerim South during made H logo cupcake transfers? injecting into his arms on the weekend when Haemophilia Awareness Week. In 2012 her They’re fully edible and will turn your we have some time. He does the tourniquet employer, the Neerim District Community red cupcakes into something truly and prepares his veins. It won’t be long Bank®, is supporting awareness with a fabulous! before he can do it himself.” “casual clothes for a cause” day. Download an order form from our Adam’s determination to overcome his “It’s important to get an awareness of website www.haemophilia.org.au challenges has meant he has come ahead in haemophilia out there so that people (click on the Awareness Week logo leaps and bounds in the last few years. understand what it’s really about and can on our homepage to be directed or have a bit of empathy. The community look under Events and Awards) or Adam was diagnosed with haemophilia here knows a lot about haemophilia now.” email [email protected]. How can you help? Our aim is for every child with a bleeding disorder to grow up to lead an active, independent and fulfilling life. This is a lifelong goal for people with bleeding disorders which can take perseverance, constant attention to their health and courage.