Issue 43 Winter 2015 Newsletter of Haemophilia Foundation Queensland
From the President
Hello everyone, remember 1-3 recovery and minimise further October is the 17th Australian & damage, rest is an important When a bleed is occurring there New Zealand Haemophilia & aspect of treatment. Doctors and is often frustration in trying to related bleeding disorders Physiotherapists know form first- rest, we all know that feeling. conference – see you there. hand experience that better Sometimes it’s difficult to avoid outcomes are achieved using a joint that is bleeding and This month I when rest is included as part can often lead to time off school want to of the treatment plan – just or work to recover. It is clear reinforce the give it time, rest helps stop from my experience that rest clear need re-bleeding (including small helps, take wrists as an example for rest after micro-bleeds that can be – try using the other hand and a bleed, undetected) from occurring with a little practice it’s amazing many of us and also ensures that a joint how you adapt even to the point treat and is less likely to have of being able to use either hand move on with life without giving permanent damage. There is to self-infuse factor which has the affected bleed time to heal. evidence to show that walking on helped me on many occasions. We may consider the bleed all or using a blood filled joint can sorted but tissues damaged has severely increase damage to An important point to note here is occurred and to get the best cartilage. To next page
Inside this issue: From the LCCH Team 2 New Cycling Record 8 5 Ways to Avoid a mid life Crisis 14 Women Carriers Forum 4 Living with vWB 9 New Hep C Drugs 16 LifeTec Visit 5 Kids Issues 10 Gold Coast Conference 16 LCCH Visits and meetings 5 Inhibitors & Mortality 12 HFA Membership Renewal 17 Recording Factor Usage 7 Gene Therapy Advances 12 Stoping HIV 18 Teaching the Drs of tomorrow 7 Maximising your Dr’s visit 13 Health Updates 19
Page 2 The ‘H’ Factor
Presidents Message Continued...
that medical advice I have been about your treatment plan, it’s as given does not recommend easy as picking up the phone for ambidextrous training for children a chat or making an appointment aged 7 years or under. Up to this for a review – we all want to avoid age children’s developing brains progressive joint damage! need to first acquire initial fine motor control as well as language and writing skills David Stephenson without adding further President HFQ …..Advocacy, complications. Education, Health promotion,
Support So talk to your treatment centre
A message from the QHC team at Lady C
Many of you will know there are are worried about an injury questions. still some issues being resolved have treated a bleed at home with the systems at Lady Cilento How to make or change Childrens Hospital. are taking your child to the appointments at LCCH hospital Phone the call centre - 1300
Many of these are about he 762 831 hospital itself and nothing to do Please email or text the LCCH You will need a current with your HTC team. HTC referral to the consultant (Dr For queries about: Simon Brown) The following are suggestions for supplies when and how best to coitact thye As much as we would like to paediatric team at LCCH. pharmacy assist you in this matter, the HTC upcoming procedures staff are unable to access the Please call the LCCH HTC school plans systems for booking When you: travel letters appointments. are worried about a possible bleed general bleeding disorder Sorry.
Disclaimer: All articles, advice and information included herein are written by various individuals who volunteer their input. While the ‘H’ Factor magazine puts every effort into providing honest and accurate information and where possible, reference to research articles are made to validate content, it cannot be held liable for any errors or inaccuracies in published articles. The views expressed in this newsletter are not necessarily the opinions of the Editor, their associates or supporters. Publication of contributions will be at the discretion of the Editor. Any articles containing racist, sexist, homophobic or defamatory remarks will not be published. Other original contributions and letters are welcomed and encouraged. Articles in the ‘H’ Factor cannot be reproduced without permission. Issue 43 Page 3
ABOUT HFQ QUEENSLAND HAEMOPHILIA
The Haemophilia Foundation of Queensland (HFQ) provides advocacy, education and support for people in Queensland affected by inherited bleeding CHILDREN’S CLINIC disorders. The Foundation employs a part time manager and is guided by a Board of Directors PAEDIATRIC CLINIC STAFF (LCCH) which meets monthly. Switch: 07-3068 1111 Haemophilia Mobile 0438 792 063 Dr Simon Brown — Haematologist We can be contacted on mobile 0419 706 056; or via post at PO Box 122 Fortitude valley, Qld 4006 Haemophilia Registrar Dr Melanie Jackson Joanna McCosker — Clinical Nurse Consultant Members of HFQ are entitled to benefits, including Wendy Poulsen — Physiotherapist subsidies on: Moana Harlen — Senior Psychologist Medic Alert bracelets (50% discount) Electric Shavers (up to $75 off) Contacting the Clinic Please call the mobile for urgent enquiries (during office hours only). For all non-clinical/non-urgent Supportive footwear (75% off) enquires please email [email protected] Discounted Movie Tickets After hours—call switch and ask to speak with on-call haematology consultant or present to the emergency department Appointments — Contact the Administration Officer for HFQ Management Committee Haematology or 2e outpatients for queries regarding clinic appointments Haemophilia Outpatient Clinic — Dr Simon Brown — held in 2e President ...... Mr David Stephenson outpatients Level 2, Thursday afternoons 1.30 – 3.30pm Vice President ... Mr Adam Lish Contact the Administration Officer for Haematology Department Secretary ...... Mrs Leanne Stephenson Treasurer ...... Mr Peter David ADULTS CLINIC Members ...... Mr Craig Bardsley Mr Robert Weatherall ADULT CLINIC STAFF (RBWH) Mrs Sarah Hartley Dr John Rowell — Haematologist 3646-8067 Dr John Rowell Beryl Zeissink — Clinical Nurse Consultant 3646-5727 Mr Erl Roberts Olivia Hollingdrake – Nurse (Part time) 3646-5727 HFQ Delegates to HFA After Hours — Page Haematologist 3646-8111 Mr Adam Lish & Mr David Stephenson Rebecca Dalzell — Physiotherapist 3646-8135
Acknowledgements Michael Hockey — Physiotherapist 3646-8135 Maureen Spilsbury — Advanced Social Worker HFQ is grateful for the support of our patron: His (Mon-Thur) 3646-8769 Excellency the Honourable Paul de Jersey AC . Desdemona (Mona) Chong – Advanced Psychologist (Fridays) HFQ programs and services are funded by the Queensland Government. Contacting the Clinic Please telephone in the first instance. Appointments 3646-7752 or 3646-7751 or speak to Beryl Internet Haemophilia and Genetic Clinic — Dr John Rowell — Wednesdays 1.30pm Find us on the web at www.hfq.org.au or at our Haemophilia/Orthopaedic Clinic — Dr John Rowell and Dr Facebook page at www.facebook.com/HFQLD Brett Halliday — 9am every four weeks
OUTREACH CLINICS Gold Coast Hospital (9 Oct –Adults), Toowoomba General Hospital (14 May), Nambour Hospital (15 June), Cairns Base Hospital (11 August) & Townsville Hospitals (10 August): Book through Joanna at LCCH and Beryl at RBWH
Page 4 The ‘H’ Factor A Day for the Women
1 May 2015 was a long-awaited mighty storm forecast (remember with one another in an informal day for many of us. A full-day that recent Friday when you took and respectful manner. The first workshop was organised for four hours to get home after part ended with the sharing of women who carry the severe work?) did not stop a group of 25 personal testimonies by four haemophilia gene (women heroic women from rocking up at women in the audience about carriers) to come together in a the Kedron-Wavell Services Club their unique journey with regards safe and confidential for the workshop. The strong to relationships, family planning environment to openly share their turnout demonstrates how keen and raising children. unique experiences with one another The second part and learn from was informative in various individuals. nature. It consisted This long-awaited of presentations by workshop was invited medical organised by the experts (who also Queensland made it to the venue Haemophilia Centre despite the storm!) (the Centre), about genetic together with counselling, IVF support from the processes/options Haemophilia and haemophilia- Foundation related updates. Queensland (HFQ) While largely and funding from a didactic, participants Changing also had the Possibilities in opportunity to raise Haemophilia® Grant by these women who carry the questions and clarify issues with NovoNordisk. It had been severe haemophilia gene were to the respective speakers. advertised through various come together in such a setting. means – the newsletter, the HFQ FEEDBACK Facebook page, mail-outs, word- WORKSHOP CONTENT Early feedback from participants of-mouth and at clinics, with the We wanted the workshop to be has been greatly positive. Many hope of capturing as many both interactive and informative. participants came up to us women carriers as possible. We started with the interactive privately to thank us for the part first, with an ice-breaker and workshop. They generally WHAT HAPPENED ON THAT a goal-setting activity. Thereafter, highlighted the value of being DAY women were divided into groups, able to connect with other First to arrive on-scene was according to their current life women carriers, being able to actually Graham from HFQ! stage (i.e. women who do not yet hear one another’s stories and Armed with his multi-media have children, women who have learn from one another. It was props, logistics and other children with haemophilia, and also encouraging to hear that paraphernalia, he single- grandmothers/women of adult regional participants (some had handedly set up the area to make children who have seen the to fly) said it was time well-spent. it conducive for the day’s events. evolution of haemophilia His quiet labour behind-the- treatment over decades). MAIN TAKEAWAY POINTS scenes was crucial in ensuring It is not unreasonable to say that the smooth running of the They were given questions to each of us took home different programme. Slowly but surely, facilitate small group discussions learning points, depending on women from all over Queensland and big group sharing. An who we are. The Centre has started arriving. They came from example of a question is what are gained some insights faced by geographically diverse locations the issues affecting women women carriers. While not starting from Casino in Northern carriers/extended families/ exhaustive, a few of the New South Wales all the way to partners?” This enabled takeaway points are listed below: Cairns in far north Queensland. participants to share ideas, perspectives and experiences Continues on page 15 It is heartening that even a Issue 43 Page 5 LifeTec Visit
LifeTec is an Aladdin's cave for than mobility scooters and those needing assistance tools and wheelchairs for the disabled. devices. Last month Bec, the LifeTec focus on ability not RBWH physiotherapist organised a disability and they support visit to LifeTec for us to see what anyone with needs to find the right outreach program. they had to offer. LifeTec provide tools and services for them. specialist information and advice on They want everyone to remain assistive technology. A fancy name From difficult to open jars, to independent and they aim to make for the thousands of useful lounge chairs that are just too everyday tasks more achievable products and devices that can help comfy to get out of, LifeTec have and more enjoyable, so everyone people be more independent at solutions can continue to live in their home, at work, or at school. community of choice.
LifeTec display many of these If you or a family member are items in their Brisbane and finding some tasks difficult, you Townsville showrooms and have don't need to stop doing the things a database with many more items you love or need to do. LifeTec that are available. The group of probably have a solution to help HFQ members met with LifeTec's you learn, work, socialise, achieve own occupational therapist who independence or simply get more discovered the issues and for you. And out of life. So give them a try or let concerns we had and then guided because they Mona, Maureen or myself know us around the display area to view are government funded, they are and we'll organise another visit. and try the items she thought would not trying to sell you anything. You can contact LifeTec on 1300 be most useful for our members They offer advice and assistance 885 886, visit them on-line at their needs. to everyone in Queensland via website www.lifetec.org.au or visits like we did, or through phone Facebook pages, or in person at It was really surprising what was on and skype enquiries and they also their Newmarket & Townsville offer, these products are far more provide home visits via their display centres.
LCCH Regional Visits
The LCCH team have a state-wide role and they try to be responsive to people with bleeding disorders across Queensland. Each year they travel to centres with clusters of patients. This year the LCCH team will be visiting; Rockhampton - 16th June Gold Coast - 8th September Mackay - 17th June Nambour - 20th October Townsville - 10th August Toowoomba - Mid November (date to be confirmed) Cairns - 11th August Late Breaking News
Come and have a cuppa with Joanna, Moana and Graham from the paediatric HTC team and HFQ at a venue and date to be confirmed.
Parents, children, siblings, grandparents and extended family members are welcome to come in to chat, ask questions, view / review resources, or just hang out with other families and enjoy a cuppa.
We welcome any suggestions about how this time can be made useful for families and how frequent you might like them.
We are thinking half day on a Friday, once every 2 or 3 months? Watch this space for further details. Page 6 The ‘H’ Factor
Research Help Wanted
This important research project still needs participants. The information gathered will help everyone so if you haven't started please do so. If you started previously and some questions seemed too hard, please reconsider. You can take your time and go back as often as you need to complete the survey. Issue 43 Page 7
Recording Factor Usage
Why is it necessary to record patterns which may indicate Helps HTCs compare their factor use? your child needs a change in treatment outcomes and so
treatment regimen, for example drive improvements in the Are your recording treatments dose or frequency of treatment. care of all individuals with and bleeding episodes? If so well A more accurate picture of bleeding disorders. done and thank you! bleeds will help determine the right treatment for your child Better outcomes for you. You could be doing so When at clinic you don’t have to Helps Government accurately electronically using MyABDR or recall bleed information such as plan for future treatment you may be using a paper diary. when or where etc. needs of the community. If you are not doing either we would really like to encourage By using the My you to do so. Perhaps it may be ABDR application the useful to help you understand stocktake is done for the benefits of doing so. you, which saves time. Advantages With the recording of bleeds this Taking responsibility and Disadvantages helps the Haemophilia Treatment working in partnership with your Time to record Centre (HTC) identify bleed HTC to improve your care
Introduction to Bleeding Disorders for UQ med students
To help achieve this goal, Issues that were explored some preliminary education included serious bleeds, their was given to the students. management and the importance They were taught the of listening to the patient, whose basics of haemophilia and experience and knowledge is a other bleeding disorders, vital part of their care. The impact how haemophilia is of haemophilia for the people and managed and the families it affects was also complications associated explored with thanks to Helen with the disorder. This was and Mike who spoke from their an enlightening session for own experience and were able to the students, as it highlighted offer comparisons of haemophilia the support the HFQ gives to the in the past and today. Last month, as a Haemophilia community, and why it is such a Foundation of Queensland (HFQ) vital organisation. The students This was considered a very initiative, an educational morning expressed interest in how men valuable activity by both the HFQ was hosted by the HFQ and with haemophilia can do their and the Queensland Haemophilia Queensland Haemophilia Centre treatments at home, which is a Centre, as it works towards – Royal Brisbane and Women’s huge advance in management, preparing our doctors of the Hospital, for 2nd year medical and very different to other future, informing them about the students from the University of medical models. importance of partnerships that Queensland. 42 students, divided exist between patients, families, into 2 groups attended, with the Another very important topic was hospitals and community aim of understanding how patient the management of patients in organisations. support agencies work. the Emergency Department.
Page 8 The ‘H’ Factor
New Cycling Record!
Last month (May 2015) UK minutes of racing remaining, fingered salute he gave the nay- Cyclist, Alex Dowsett set a new Alex rode quicker than Dennis’ saying, board-game pushing world record for distance cycled Hour Record pace, finally doctors of his youth. Alex says in an hour. He cycled 52.97 setting a distance of 52.937km. that over his cycling career he kilometres at the Manchester has broken his shoulder blade, Velodrome, beating Aussie rider But he reckons without the collarbone, elbow and two ribs Rohan Dennis’ previous record of whole crowd cheering him on it and despite some doctors telling 52.49km. wouldn’t have happened. He him as a kid that if I broke a bone also reckons without the factor I'd be in hospital for months, he After completing his hour Alex that he takes by prophylaxis it says he was out of hospital looked like he still had more to would never have happened. within a week with all of them. give as he lifted his bike over his head, which in itself is Having a bit of a miracle haemophilia has because as a child contributed to physical activity was some interesting all but outlawed for The words "synthetic medication" have sinister incidents in the him because of his past. When he was haemophilia. overtones in the context of professional cycling. riding for Team
Sky (2011-12) they Now physical activity But for Alex Dowsett - and all fellow didn't actually warn is actively promoted haemophilia sufferers - his regular injection any of the riders for people with will be performance-enabling rather than that he was a bleeding disorders haemophiliac and and Alex’s journey performance-enhancing. what that would towards professional involve and one of cycling began (like A subtle - and powerful - difference. his team-mates many of our walked in when members) with they were at the swimming, but his dad is a Alex can only compete as a Tour of Qatar one year and said, Touring Car competitor so he felt professional cyclist at the top 'Alex what the hell are you a need for speed. level because of this. He says doing?' He had to explain it to it's his way of life, but it can him very quickly. For the attempt itself Alex began cause concern in the cycling just under the Hour Record pace community where drug use has Alex had originally intended to because going out too quickly been endemic in the past. attempt earlier but in the build up could be fatal, but at the end of Unlike generations before him to the event he crashed while the first 15 minutes he gradually however Commonwealth time- training out on the road and built up his speed and continued trial champion Alex Dowsett suffered a broken collarbone. to do so over the entire hour. always starts his races with his During this downtime Alex Alex says the first 30 minutes blood enhanced, but his travelled around Europe with the were easy. conscience clear. ‘Miles for Haemophilia campaign’, he said that on these After 30 kilometres he was still As a child Alex received trips he saw his story spreading over eight seconds behind warnings of a possible future hope: their boy or girl could in Dennis Rohans’ pace. At the spent in wheelchairs and some other people and achieve one of halfway point he knew that he doctors recommended he take his own personal career had more left in the tank and up chess or a musical ambitions though this world posted a few quick times. The instrument, but he chose record attempt. pain didn’t show as he neared professional cycling for a career the crucial final 10 minutes where instead, with sports cars as a Based on an article by Tom many record attempts fail, a huge hobby. Alex has had his fair Reynolds BBC Sport roar ripped through the share of tumbles. But they are http://www.bbc.com/sport/0/get- velodrome when, with nine treated with the same two- inspired/32434988 Issue 43 Page 9
Talking About von Willebrand Disease (VWD)
I was diagnosed with von Willebrand have always been anaemic since also suffer gynaecological problems. Disease (VWD) around nine years childhood. When my period started, Aside from my own chronic ago, along with my now 16 year old it came heavily every monthly that I anaemia, women like me are also at daughter Star. When I talk about my would sometimes have to lie down risk during pregnancy and childbirth. bleeding disorder people say “You and I grew up thinking that heavy In my experience all me three don’t look sick at all.” monthly periods were “normal” for children were born pre-term and I me. suffered bleeds and premature Our journey with this bleeding labour, forcing me to take extra time disorder started a few weeks after Despite the discomfort of my off work and having period of bed my daughter was born. In the middle monthly periods I was never rest from the third month. of the day she started to nosebleed. considered a candidate for a Alarmed at the sight of blood gushing bleeding disorder. “Bleeding is for von Willebrand Disease is not as from the nose of our infant girl, we boys,” one GP told me when I raised difficult to manage as classical rushed her to the hospital emergency the possibility that my daughter haemophilia and while the quality of room. could have a bleeding disorder. life for people with VWB are not frequently impacted by bleeds we Star was born with burses all over Mothers who carry the haemophilia still need to be careful if we want to her body, which we mistakenly gene pass it on to their sons not live as normal as possible. As a though, were merely “birth marks”, daughters and the affected son the n parent I tended to be over protective unknown to us, bruising was already passes the gene on to his daughter, of my daughter but with the a sign of the condition. It took several who is a carrier but can also have diagnoses she doesn’t have to live in years and countless doctor hopping symptoms, but VWB is an equal a bubble. Like many other medical and tests before Star’s frequent opportunity bleeding disorder and conditions, we need to manage it on nosebleeds and bruises finally got a affects males and females equally her terms and not allow if to rule our name to it. but it was overlooked by the doctors. lives.
Edited for size from an article by Andrea The diagnoses of von Willebrand Many women with bleeding Trinidad http://www.interaksyon.com/ Disease by my haematologist- disorders are disadvantaged like article/106475/her-story--how-a-mother- oncologist, still echo in my mind. myself because aside from suffering deals-with-her-own-her-daughters-and-other- Suddenly everything made sense. I general bleeding symptoms, they peoples-hemophilia
VWD Total Ankle Replacement
von Willebrand disease (VWD) is a recognized cause of secondary ankle osteoarthritis (OA). Few studies have examined orthopaedic complications and outcomes in VWD patients treated for end-stage ankle OA with total ankle replacement (TAR). To evaluate the mid-term outcome in VWD patients treated with TAR. Eighteen patients with VWD aged 34 – 69 were treated for end-stage ankle OA with TAR. After an average of 7.5 years the complications were recorded. Component stability was assessed with weight-bearing radiographs. Clinical evaluation included range of motion (ROM) tests and under fluoroscopy. Clinical outcomes were analysed by a visual analogue scale, and a Health Quality of Life (QOL) Survey.
One patient sustained an intra-operative medial malleolar fracture. In two patients delayed wound healing was observed. Two secondary major surgeries were performed. Pain level decreased from 8.2 preoperatively to 1.1 postoperatively. Significant functional improvement including ROM was observed. All categories of the QOL score showed significant improvement. Mid-term results of TAR in patients with VWD are encouraging. The total rate of intra-operative and postoperative complications was 33.3%. However, longer term outcomes are necessary to fully understand the clinical benefit of TAR in patients with VWD. Source: http://onlinelibrary.wiley.com Page 10 The ‘H’ Factor
Aspiration stops joint damage
Researchers in Western Australia period. Aspiration was performed joint rupture did not occur. No studied hospital records of boys as soon as possible after a other side effects from the under 16 years of age with bleed. Examination was procedures were observed during severe haemophilia A. Patients performed to confirm the 11-year study period. were examined every 3 months haemarthrosis and rule out other Of the 22 boys who underwent by a haematologist, a paediatric conditions. the washout procedure, 15 had rheumatologist, a paediatric clinically normal joints during physiotherapist, a haemophilia Saline was injected incrementally follow-up. Seven children with nurse and a haemophilia social until the fluid removed was clear. joint damage either had damage worker in a multidisciplinary Corticosteroids were injected into documented prior to the outpatient setting. the joint after the procedure, and factor was administered at the procedure or did not have Of the 46 boys studied, 22 start and the next morning to complete removal of required joint washouts to avoid avoid additional bleeding. hemarthrosis during the joint damage during the 11-year procedure, the researchers study period, with a similar Of the 84 joint bleeds, no reported. protocol followed for each patient. infections or extra-intra-articular Edited for size from: Manners PJ, et al. J In total, 84 procedures were bleeding occurred as a result of the washout procedures, and Rheumatol. 2015;doi:10.3899/ performed during the study jrheum.141236.
Haemophilia Word Find Can you find 18 words relating to haemophilia and bleeding disorders in this table? Words like ADVOCACY. Other words top look for are: EDUCATION; INHIBITORS; BLEED; FACTORS; JOINTS; BLOOD; HAEMOPHILIA; BODY; PROPHYLAXIS; HEALTHY; RESEARCH; CARRIERS; HEREDITARY; SWIMMING; CLOTTING; INFUSIONS; and VONWILLEBRAND
I N H I B I T O R S C L O
J P R O P H Y L A X I S T
O H E I X A P E D C C U E
I E A N U E O R V A L S D
N A S F I M T U O R O W U
T L E U B O D Y C R T I C
S T A S N P R Y A I T M A
D H R I G H D I C E I M T
O Y C O H I E O Y R N I I
O P H N F L C J A S G N O
L X D S D I V O N A D G N
B L E E D A F A C T O R S
V O N W I L L E B R A N D
H E R E D I T A R Y P R O Issue 43 Page 11
Weird Science
Sometimes the days can go really rocket carry a pay load. How much First published by the Irish Haemophilia Society. slow, but if you want to fill some weight will it take to stop it taking http://www.haemophilia.ie/content.php?id=7&article_id=698&level3_id=860 time and explore the world around off? you that’s doing science! It’s about observing, experiments and For more of a mess you could try figuring things out. the baking soda and vinegar volcano but please do it outside. You won’t be bored if you do your own experiments but be sure to tell Most kids have made coke volcano mum or dad before you try these using Soda and Mentos. It’s is a ones. All you need is things like real science experiment that baking powder, lemons, a magnet, doubles as a great excuse to make balloons and a straw ~ no fancy an explosive mess (it can produce chemistry sets needed. eruptions of up to 6 metres high if done correctly) but if you don’t The straw rocket blaster have Mentos you can do a similar You need string, some tape, a experiment with baking soda and drinking straw, and a balloon. Take vinegar which is a bit less messy one end of the string and tie it to and you can even put a timer in it. something solid and fixed, like a How? chair or a door handle. Thread the other end of the string through your Combine 1/4 cup of vinegar and straw and tie it to another chair or two drops of dishwashing liquid handle at least four metres (the soap in the soda breaks the away. Make sure the string is taut. surface tension, making a bigger volcano) in a tall glass or beaker, Now blow up the balloon, keeping then wrap the baking soda in toilet the opening closed with your paper, put a string around it and finger. Tape the straw to the drop it into the beaker. Now you’ve balloon and slide the blown-up got a little extra time before the balloon along the string until the vinegar eats away at the toilet opening of the balloon is at one paper and gets the baking soda end and the rounded part faces the wet. It's kind of a timed explosion long line of string. When you let the for your volcano. air out of the balloon, it will shoot like a rocket along the line of string For extra colour add food colouring to the other end. to the vinegar. Don’t use baking How long can the sting be for the powder, as this contains inert balloon to still make it the entire ingredients like cornstarch that will length? dampen the effect.
Tie the string up a staircase or to a The lemon-powered clock tree limb outside to see if it will For this, you need galvanized nails, make it to the top; a couple of copper 1 or 2c pieces, You can tape some copper wire, and a juicy the other, connected with weights to the lemon. Stick a nail into one side of additional copper wire. This will balloon to the lemon and a copper coin into increase the voltage. In fact, the make the opposite side (you may need to more lemons you link together the your cut a small slit into the peel first). more power you will get. These are now natural battery terminals. Why? Galvanized nails are covered with zinc. The zinc atoms Attach the ends of these wires to are drawn toward the copper, the correct terminals of a small creating an electron flow through battery-powered clock and you the lemon from the nail to the coin. may have enough voltage to power Now tie copper wire to the coin and it. If not, use two or more lemons, another to the nail, leaving the putting a nail in one and a penny in ends free. Page 12 The ‘H’ Factor
Haemophilia A Inhibitors & Mortality
A new study called “Impact of when other risks for death, such people with inhibitors in the US Inhibitors on Haemophilia A as older age, liver disease and haemophilia population and Mortality in the United States,” infection with either HIV (the collect information about when was published January this year virus that causes AIDS) or they occur. Routine screening in the American Journal of hepatitis C virus, were taken into through the QHC’s may help Haematology. The study account. uncover an inhibitor early in its included over 7,000 males with Of the 48 patients with an development when treatment to severe haemophilia A. Patient inhibitor who died, 42% had a eliminate it is more likely to be data for the study covered a 13- haemophilia-related cause of successful.” year period and in that time 432 death (due to a bleeding Source: CDC, March 24, 2015 participants died; of those, 48 complication) vs. only 12% of had an inhibitor. patients without an inhibitor who - See more at: http:// died of a bleeding-related www.hemophilia.org/Newsroom/ Primary findings were as follows: complication. Medical-News/CDC-Study-Looks- Males with severe haemophilia A at-Correlation-Between- who have an inhibitor are at Additional surveillance data is Hemophilia-A-Inhibitors-and- increased risk of death. needed an inhibitor prevention Mortality? Males with an inhibitor were 70% strategy can be developed. The tr=y&auid=15541702#sthash.2PK more likely to die compared to results of this testing will be used Gdijt.dpuf those without an inhibitor, even to determine the number of
Gene Therapy Gets Closer
For many years, researchers have making it a potential candidate for The third dog had pre-existing been investigating the use of gene gene therapy in patients with inhibitory antibodies and also therapy as an alternative treatment haemophilia. showed significant improvement option for patients with following treatment. The animal's haemophilia. One gene therapy FIX-Padua was administered via haemophilia eased from severe to strategy that has shown some injection to three dogs who had mild, and this persisted for up to 3 promise involves injecting patients severe forms of haemophilia B years. What is more, the inhibitory with vectors. However early trials of similar to those found in humans. antibodies that the dog already this technique have raised possessed were eradicated - concerns because the higher something the researchers say the vector dose, the stronger has never been seen in an the immune response. animal model before.
As a result researchers set out The team also tested FIX- to find a technique that delivers Padua in mouse models of lower vector doses to reduce haemophilia and found it immune response, while produced similar results. effectively producing clotting Dr. Arruda says the findings factors. may provide a new approach Chief researcher Dr. Arruda to gene therapy for and colleagues found that an haemophilia and perhaps other The two dogs had no prior Italian man with thrombosis genetic diseases that have similar inhibitory antibodies and showed (excessive clotting in the blood complications from inhibiting significant improvement in their vessels) had his condition triggered antibodies. A clinical trial is already haemophilia within 1 week, easing by a mutation in a factor IX (FIX) underway in the US testing the from severe to mild. In addition, the gene. This gene - which they safety and efficacy of the FIX- dogs had no bleeding episodes for named FIX-Padua after the Italian Padua gene therapy in adult up to 2 years and they had no man's home city - was the opposite patients with haemophilia B. immune response to FIX-Padua, to all previously identified FIX nor was their any sign of Edited for size from an article by Honor mutations that cause haemophilia. thrombosis. Whiteman Its ability to clot blood is 8-12 times http://www.medicalnewstoday.com/ stronger than normal FIX genes, articles/290891.php Issue 43 Page 13
Making the most of Clinic Appointments
Preparing for any appointment what type, so they can plan for is true of GP’s and Haemophilia with any doctor can be a cause future years and organise for specialists. With haemophilia one of stress. Knowing you are enough to be available in of the primary goals is to prepared for your appointment Australia. determine if there is a specific can help reduce stress and also event or incident that could have make sure you get the most from This can be done by using the caused a bleed to occur. A your QHC visit. The appointment MyADBR app, journal or secondary goal is to confirm that should be a time for you to website; or you can create your the level of factor currently receive answers to any questions own journal. This is vitally prescribed is working for you. or concerns you may have and to important because the clarify any treatment plans you are asked to follow.
QHC Appointments Don’t be afraid to participate, and take an active role in your care. One of the best ways you can do this is to provide the team with as much information as possible regarding any symptoms or health incidences since your last visit.
Other Doctors Any medications prescribed at the clinic will be in their records, but they may not know what other medications & treatments you are one and these can have an impact on your health outcomes. Many people use alternative therapies and it’s symptoms of everyone’s Questions for the Doctor useful for them to know about bleeding disorder is different. At Time is limited during clinic visits. these as well as your other the onset of a bleed and other Prepare for your appointment by medications so they can avoid symptoms, you should write thinking about what you want to unintended or harmful down a description of your do during your visit. Do you want interactions. Also take a record experience. All patients should to: of any visits to other health care be active in recording their Talk about a health problem? professionals, your local GP, health not just people with Get or change a medicine? physiotherapist, psychologist etc bleeding disorders. as well as chiropractors, Get medical tests? naturopaths, or other If you’re not using MyABDR or Talk about surgery or practitioners. the event is health related but treatment options? not bleed related, bringing any Recording incidents and notes with you as it can help Write down your questions to treatment progress remind you, and allows for your bring to your appointment. The It’s good to document your doctor better understand what’s answers can help you make symptoms and treatment going on & how your symptoms better decisions, get good care, progress. These records help the affect your daily life. and feel better about your health clinical team understand how care. well your treatments are working Questions from the Doctor and to identify any patterns when All doctors ask questions to try Bring paper and a pen (or a bleeds occur or other symptoms & pinpoint your symptoms and Smartphone) appear. It also helps the Aus review if changes are needed in It helps to write down things that Blood people know what amount your treatment program or a don’t make sense, and ask for of blood products you use and new treatment is required. This Continues on page 15 Page 14 The ‘H’ Factor
5 Ways to Avoid a Mid-Life Crises
The expectations of masculinity we tend to fade out rather than headlines can be wearying, and have been shifting and some men finish when we want to. Ultimately television news is the worst are struggling to live up to the you career is pointless," Fraser culprit. With newspapers you impossible standard of being an says. "Even if you do everything have a choice to read which ‘alpha male’: having a good career, you ever wanted to in work and sections you like, and choose good marriage, a couple of good reach the top of your field, you what you feel is relevant," Fraser kids, earning a lot of money and still eventually fall off the top of it. says. "In front of the TV, you’re at retiring well. With that sort of More likely you fall off somewhere the whim of the producer, so it’s pressure, it’s very easy to feel like in the middle, though, at your the persistent list of negative you’re doing something wrong or peak. At some point there will be stories interspersed with adverts have failed. It's no wonder the a crash, so you must ask that make you feel awful. If you suicide rate amongst men is at its yourself: what difference do you begin to filter that 'consumer' highest since 2001 and the age want to make?" Fraser points to a narrative, everything can change. group most affected are those quotation by the late Labour Party I call it telling yourself a better aged between 45 and 59. This grandee Tony Benn: "The people story – you can pick and choose feeling and this pressure creates what messages you receive." It the true midlife crisis but it can be doesn’t stop at news. Social avoided or minimised. media can also be harmful, especially if you see an endless 1. Help somebody worse off stream of gloating Facebook than you Reconnect with your posts and self-congratulatory own sense of wellbeing and LinkedIn updates: evidence has purpose by helping somebody suggested that there is a link worse off than you It may seem between high Facebook activity like the last thing a person in crisis and depression. "You can choose needs, but if you’re stuck not what you pay attention to," Fraser knowing what to do, helping says. "So choose what makes people who perhaps have more you happy." Tempting as it can be serious problems than their career to revert to old habits, it's not falling on hard times or suffering always a good idea. from unhappiness at home can be enormously fulfilling. 5. Listen to your elders For men who experience a crisis of identity 2. Open up It is an ancient cliché, in middle age, there is a tendency but even in the modern age where to reconnect with their youth, be it we have more methods of via a new pair of high-top trainers communication than ever, most or letting loose in a way they likely men remain just as unwilling as gave up years ago. While Fraser ever to articulate their emotions. says that’s not wholly unhelpful, Fraser says that learning to who have sacrificed their view in more important is looking in the verbalise and share our doubts, order to get to the top have very other generational direction, worries and insecurities is often often left no footprints in the towards elders who know what it's the first step towards solving them. sands of time", and argues that like to deal with the challenges of And it needn’t be as difficult as you signing your life over to be a ageing. "Listening to wise heads imagine. Start one-to-one with the "wage slave" to a corporate can save us a lot of grief," he right person, rather than to a group employer generally means says. "Generally as a society we in the pub. Let your friend know working on somebody else’s plan, don’t put enough value on you value his or her opinion and while ignoring your own needs. learning from the old: those that you want to ask them No matter how much you earn, who’ve been there and done it. something," he says. "It needn’t be your real wealth may not lie in The emphasis is always on the formal or dramatic, but you might your pocket," he says. latest answers and treatment, but be surprised by the results." most of those stem from ideas 4. Tell yourself a better story 3. Remember: your career is that are decades old. For all the With the news full of horror and pointless Most men tend to define therapy in the world, watching It’s misery, learning to filter can be themselves by what they have a Wonderful Life is the perfect imperative to maintaining a achieved in work, because that is guide for a mid-life crisis." positive outlook on life. Relentless what they are told is important. But Dr. David Fraser spools of misfortune in the jobs come and go and in the end Published in e-male Issue 146 May 2015 Issue 43 Page 15
Clinic Appointments Continued... clarification. If there are words If you think you need moral scheduling other appointments, that you’ve never heard of, ask support or a back-up for a poor referrals, or tests required. your doctor to spell them. Make memory, bring someone with Failing to follow up on these or sure you record & understand you. They will give you support any day-to-day your plan. You could use time during the appointment and they recommendations could have an between appointments to look up can help remind you of your negate and improvements in what your doctor has told you. questions and concerns. your health. The smartphone can help keep you busy if your wait is long! Having someone with you can Medical conversations can get take a lot of pressure off, complicated. There is a lot of Bring your Medicare card, if especially if you're facing bad information being exchanged. required. It sounds a bit silly, the news, a complicated diagnosis, You have to talk about what's clinic tam already know who you or even if you just get flustered going on, remember when things are, but some treatments and around doctors. Whether it's started, think about procedures require you to prove your partner, a family member, environmental cues. If you don’t your Medicare entitlement and it or a trusted friend, they can offer think you understood any avoids delays if a new treatment support as well as a second set answers or advice you get or procedure has to be of eyes and ears. relating to bleeding disorders you undertaken. Cards also have can also ask the HFQ staff to expiry dates and the public After Your Visit help you further understand the health system is required to Be sure to follow any directions information you have been given. collect this information from you. you were given for treatments of
Woman's Forum Continued...
Women carriers are the main sort of support/programmes Keep the conversation going advocates for their children with they would like to have from the Even if you did not attend the haemophilia and their needs Centre and HFQ. Target areas workshop, you can approach the change as they reach different (e.g. support for partners of psychosocial workers at the milestones of their journey. women carriers) were identified Centre or to make contact with Women carriers in regional areas and some creative ideas were the HFQ proactively, if you wish do struggle more and will require also generated through the to contribute to this discussion. more resources and support. discussion. Some spoke about Mothers need more guidelines on the need for emotional support, This workshop is the first step in carrier status testing for their respite support and even the right direction in providing a daughters. networking opportunities for sustainable service to women It is important to include other children to get to know one carriers. There is much work to children, partners and extended another. be done and we are optimistic families in education and support that together with the women programmes Networking among women carriers who have spoken, we Networking opportunities are carriers would be able to develop more highly-valued by women carriers To our knowledge, there are a meaningful services for this and women carriers are keen to few Facebook groups which community. support one another. have been launched by Different people cope differently individuals to help connect Finally, we would like to applaud and there are some factors which parents/women carriers. Some the bravery of our women are protective and make it easier. participants have also said they participants who openly shared are happy for their contact their stories and experiences with WHAT’S NEXT? details to be passed on to other other women in the group. Further collaboration between women carriers. So, if you are Without your active participation the Centre and HFQ needing more information/ and openness, the workshop As a big group, participants had support, you can contact the would not have achieved its the opportunity to discuss what Centre or HFQ. purpose. Thank you. Page 16 The ‘H’ Factor
PBAC Decision ~ New hepatitis C Drugs
PBAC has recommended the said that Government funding is unsuccessful treatment or who following hepatitis C treatments be needed urgently for these have advanced liver disease. added to the Pharmaceutical medicines to be listed on the PBS Benefits Scheme (PBS): so they are affordable. AND IF YOU HAVE HEP C? If you have hepatitis C and a Daclatasvir (Daklinza®) in The next step in the process is for bleeding disorder, remember that combination with Sofosbuvir the Australian government to you need to have your liver health (Sovaldi®) consider the recommendations assessed before you can be Ledipasvir with sofosbuvir because access to these considered for treatment: (Harvoni®) medicines is critical. Make sure you have your liver
Sofosbuvir (Sovaldi®) “GAME CHANGERS” health checked regularly
PBAC stated that “new treatments These new treatments are part of If you don’t know where to start, for HCV were very effective” and the new wave of Direct Acting talk to your Haemophilia Centre would offer options for treating Antiviral (DAA) drugs that are far Stay in touch with your hepatitis people with genotypes 1 to 6. more effective against hepatitis C clinic about what’s new than the previous treatments. Most PBAC also recommended that of these treatments are already Go to your appointment with these oral treatments should be available in other countries. the hepatitis clinic after your listed in the General Schedule, liver health check, even if the meaning that prescribing would no In clinical trials they have had very fibroscan shows your liver longer be limited to specialist high success rates (some over health is stable 90%) with few side-effects, and clinics. And let your Haemophilia Centre shorter treatment courses. Some However, PBAC was not satisfied need to be taken in combination know about your liver test results with the proposed prices and with other medications to be or how your treatment is going to advised the Health Minister to effective. But some will be make sure they stay in the loop. negotiate lower prices for them. available in interferon or ribavirin- free combinations. There have From: HFA E-News, Special Hep C edition NEXT STEPS been encouraging results even with Gavin Finkelstein, HFA President, people who previously had
The Aus & NZ Conference is OUR conference
The 17th Haemophilia and If you would like information on the infected individuals, all conditions Related Bleeding Disorders is on conference please go to the etc.) so if you want help from HFQ the Gold Coast this year. The conference website. HFQ is keen to attend then please download our theme for the conference is to assist members to attend and Scholarship Application form from “Facing the Future Together”. We we would like to see a the website and send it to us are looking forward to a good HFQ representation of members from ASAP. If you need any other presence at this Conference across Queensland and also assistance, please contact Graham where we will discuss and debate representing the various elements at the HFQ office (07) 30171778 or issues and follow up on ideas and of our community (affected and mobile 0419 706 056. connections made.
Issue 43 Page 17
Membership Renewal
HFQ membership subscriptions support for those in need, and a are due for renewal. The side of range of targeted services in this page can be torn off and partnership with the Queensland used as your 2015-2016 haemophilia centre addressing Haemophilia Foundation community needs could not be Queensland (HFQ) membership achieved on Qld Health money form. alone.
HFQ is not like life insurance. IT Having a membership base is not a union, nor a church or a allows us to demonstrate we school; but we are a community represent the bleeding disorders of people dealing with the issue community and the fees you pay of living with a bleeding disorder. help make up the shortfall in the We are a registered group that programs we currently provide. through our financial members can prove that we represent We rely on fundraising to ensure people with bleeding disorders in these services happen and I Queensland. thank those who donate to us or volunteer their time at events Through the HFQ board and like Bunning's BBQ’s and the subcommittees we advocate for like. improved services and programs on your behalf and we provide A significant part of fund raising direct programs and activities is membership subscriptions and where you have made the need this is one easy way you can for these apparent to us. help HFQ help those in need in the bleeding community. We only have one part time staff member so your fees are Please complete the attached important to us. Over the past 12 membership form. HFQ looks months HFQ has continued to forward to your continued provide services to the bleeding support and thanks you for your disorders community in subscription. Queensland and we rely on your support in the form of We recognise that the small membership to maintain these annual fee can still be too much services. for some people so we also have provision for accepting Limited funding from Qld Health members in financial distress so provides financial support which that you still remain part of our goes some way to allow us to organisation. Please talk to deliver outcomes for our Graham if you are in this community, however situation government funding is not dependable and our current Regards, funding will run out in 2017. A number of activities that we do require us to raise money David Stephenson elsewhere and independently of President HFQ ….. Advocacy, Qld Health. Health promotion, Education, Support Community Camp, regional support activities, youth camp & mentoring activities, health &
wellbeing seminars, welfare
RENEWAL TIME RENEWAL Please tTear off this section and fill out the details on the reverse to renew your membership your renew to reverse the on details the out fill and section this off tTear Please HFQ MEMBERSHIP MEMBERSHIP HFQ Page 18 The ‘H’ Factor
Good Viral News
A new therapy using antibodies creating new strains and the in HIV patients was shown to immune system cannot keep up reduce the presence of HIV up production of antibodies to fight to 300 times. The study was the it. The antibody the patients got, first in humans after previous called 3BNC117, is a “broadly research showed success in neutralizing” antibody produced mice and nonhuman primates. in 10 to 30 percent of HIV positive people. It’s special Dr. Barry Zingman, medical because they can target 195 out
director of the AIDS Center and of 237 different HIV strains.
clinical director of Infectious This antibody takes years to
entitles you to access HFA services and services and HFA access entitlesyou to ly each year and membership is open to all all membership open is to each ly year and
Diseases at Montefiore Medical develop naturally, and by then it
Ju lly Center and a collaborator on it is too late to help fight the virus. the study said the findings of However, if injected in a patient this study are very significant in at a much earlier stage of that it is the first proof of infection, the antibody can target ______concepts that an antibody- the virus’s binding site that allows
based therapy could be it to invade cells and replicate. By
Total: $ Total: effective in controlling HIV attacking the virus at this stage infection. This new type of and at this site, the antibodies therapy could be used to prevent the virus from replicating. replace or supplement standard
drugs. The treatment has other potential applications outlined in a Forbes
The antibody treatment was article including preventing injected in a range of infection in people at high risk of concentrations in 12 negative exposure. However, it’s unlikely
______and 17 positive patients. After that this treatment would prevent 56 days, viral loads had infection on its own and would ______dropped up to 300 times in need to be used in conjunction
eight the positive patients who with other HIV treatments.
Email: Email:
Donation : $ Donation : received the highest dose of
antibodies. “A single neutralising antibody is unlikely to sustain HIV HIV is difficult to treat because suppression for a long period,” it is constantly mutating and the study’s co-lead author, Dr. Florian Klein, an assistant professor of clinical investigation at The Rockefeller University’s
off payment ($100) payment ($100) off Laboratory of Molecular - Immunology said to Forbes. one “Therefore, neutralizing antibodies are most likely to be used together with other neutralizing antibodies or currently available HIV
Annualor ($20) medication.”
By Katie Peoples April 29 2015 ______
______http://www.hivplusmag.com/
______cure/2015/04/29/study-first-human-trial-
Please mark this box if you do not want you details data base. HFA recorded onwantdothe not Pleaseif mark box this you you shows-antibody-causes-300-times-drop-
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Membership of HFQ for 2015/16 is $20 per annum for each membership or $100 for a lifetime membership. These fees are due atdue are 1 These lifetimefees membership. membershipa or$100 each annumfor per $20 is for 2015/16 ofMembershipfor HFQ condition. a with bleeding a person supportto wanting people and families their condition, peoplea with bleeding 4006 Qld Box 122 at HFQ if Valley Fortitude PO off returnand to this Please tear form, out fill Name: Address: PhoneNo: Membership: automatica joining HFQ Australia where of Foundation Haemophilia exception the membersdoes with on shareHFQ information not mail supporter andfree. toprograms and Haemophilia receive National Issue 43 Page 19
Health Updates
Get Moving implanting in to avoid haemophilia. who carry X-linked chromosomal Getting enough exercise and Instead, the mother gave birth to a abnormalities. The new test eating healthy foods are important. boy, Jess, who doctors later reduces invasive procedures in Many studies and reports confirmed is affected by the pregnant women and can clarify recommend that adults get 30 condition. inconclusive reading by ultrasound. minutes of physical activity and By Dr Rebecca Robey in BioNews 641 The couple allege that they that children get 60 minutes of http://www.bionews.org.uk informed that the child was not a activity per day, at least 5 days a girl. If the couple had known they week. would have considered terminating
the pregnancy. Sex selection to It may sound tough to fit in that reduce the risk of a serious genetic much exercise most days of the condition is permitted in Victoria. week, but it’s easier than you think. Try upping your heart rate during The couple love their little boy, but your usual daily activities. For they tried everything to avoid this instance, walk or bike to work situation, and now they say their instead of driving or taking the bus. boy will have to go through pain Take the stairs instead of the and treatment in order to survive. escalator or elevator. If you’re new By Antony Blackburn-Starza in BioNews to exercise, start slowly and work 450 http://www.bionews.org.uk/ your way up to the recommended amount of activity. Human Genome Mutation Rate HFQ Note: With IVF, there are 2 Originally Published January 2015 UK Scientists have worked out the PGD options. PGD can screen mutation rate in the human embryos to determine sex, or PGD Walking Helps Osteoarthritis. genome. The team have found that can screen embryos to determine if People with osteoarthritis benefit it is one mutation in every 15 to 30 they carry the haemophilia gene from walking. Even 6,000 steps a million letters per generation, which (regardless of sex). Accuracy rates day prevented subjects from means each person has 100-200 are 96% to 98% and vary developing “functional limitations”; new mutations in their DNA. depending on the IVF clinic, so the problems getting out of bed or a foetus (boy or girl) still had a 2% to chair, negotiating footpaths etc. Haemophilia researchers 4% chance of having the
previously estimated the incidence haemophilia gene. The steps can be accumulated of mutations in the haemophilia during the course of the day, not all gene to be a one in 50,000. The Biogen moves into gene therapy at once. Walking helps people with exact mutation rate - one in 30 osteoarthritis by increasing Biogen Idec has made a deal to million nucleotide in the whole develop gene therapy for flexibility, strengthening muscles genome each generation confirms that support joints, and improving haemophilia A and B using previous findings lentiviral vector-based gene flexibility and circulation. By Alison Cranage in BioNews 524 http:// therapies. There is hope that gene www.bionews.org.uk/ therapy could one day lead to a Consider using a pedometer to count your daily steps. Then work single-dose, lasting therapy. your way up from 3,000 steps per Sex Determination Possible at 5 day to the recommended 6,000, Weeks. Lentiviral vector technology uses say the authors of the study. A new test has been developed to engineered viruses to insert genes Arthritis Care & Research online journal determine the sex of an embryo into the genome of a living cell. In January 2015 from only five weeks old. The test the case of haemophilia treatment, utilises blood samples from the potential vectors will be designed mother & carries no risk to the to carry healthy copies of clotting Australian couple sue over child. protein genes into the liver cells of embryo test 'failure' haemophilia patients. The hope is An Australian couple has launched The first trial used blood samples that this will allow the patient's a court action after the mother from 203 pregnant mothers verified body to produce the normal clotting gave birth to a boy instead of a girl. the accuracy of the technique with protein, stopping the symptoms of The couple had undergone IVF 100 percent accuracy. haemophilia. and PGD at Melbourne IVF to By Dr Lucy Freem in BioNews 788 select female embryos for- The test may be useful to women http://www.bionews.org.uk
Issue 43 The ‘H’ Factor
Important Dates HFQ Annual Camps for HFQ Members Haemophilia Foundation Queensland has been organising and OBE’s (Old Boy’s Essentially) delivering camps and activities for children with haemophilia A & B as Meets in SE Queensland on the well as other bleeding disorders. Our community camps are a time first Wednesday of each month. when you can bring the entire family along. We keep the costs low and grants are available to make the camp affordable for everyone. Community camp 2015 We’ve Over the past 4 years HFQ has sourced more than $120,000 worth of rebooked Noosa North Shore funding to make this happen. Retreat for 28 – 30 August 2015 Children with a bleeding disorder and their families go through a 17th Australia & New Zealand rollercoaster of emotions while growing up - frustration, anger, Haemophilia Conference 2015 sometimes depression and often isolation because not everyone Gold Coast. 1-3 October around them understands what life is like with a bleeding disorder. A bleeding disorder diagnosis not only affects the entire family, but Haemophilia Awareness every part of a child's life. Week & Red Cake Day 11 – 17 October 2015 While our original camp date was flooded out by cyclone X it’s on again and we invite you to register you interest in attending. By Youth camp 2015 This is running our annual camp as a low cost event, more families can booked for 30 October – 1 attend and that enables children with bleeding disorders to meet and November 2015. More details share their experiences with other children who are living with the will be in later issues. same condition, while also improving their skills and knowledge in managing their bleeding disorder. Participants learn about balancing Please call Graham at the office on their lives through a mix of fun activities and educational exercises. 07 3017 1778 for more info on any of these events and activities. To attend this years community camp, please apply ASAP as places are limited. You can download the application form from our website or call Graham at the office. The other annual camp we run is exclusively for young people with bleeding disorders. Most years this has meant the boys living with a bleeding disorder, but we know that siblings (including girls) also have difficulties coping so if your have children who would benefit from a weekend away at Emu Gully with lots of supervised fun activities, please let us know. Our youth camp provides your children and teenagers with a fun-filled, positive time away from home. This years camp is at the end of October and will be designed to meet the physical, social, emotional and health needs of each participant. Oh, and they're awesome fun, too!
Previous youth camp were a chance to splash-out while doing a mud run, go-fast on the buggies and climb the walls (literally — we do have rock climbing), but the boys also got to hang out, make friends, feast on great food, discuss self treating, and laugh a lot! And all of this is made possible by our amazing, accredited volunteer youth leaders who have paid their own way to join you on camp!
Interested? Check out the details on our website and talk to Graham or discuss it with the LCCH team or one of our youth mentors. Get in quick and we promise your kids the time of their life!
About The H’ Factor The ‘H” Factor is published four times each year by HFQ. We occasionally send important information and updates on local and relevant events for people affected by bleeding disorders to subscribers of our email list. If you would like to be on the HFQ Email List, please register your interest by sending through an email with the subject title The ‘H’ Factor email list’ to [email protected]. You can be removed from the list at anytime. Graham Norton HFQ Manager & The ‘H’ Factor editor Ph: (07) 3017 1778 E: [email protected]