Need to know more about coeliac disease?
Paul Bleakley has now signed up to run for the Coeliac Research Fund at the Sydney Running Festival. He is running for his wife and daughter, his wife, Rose, has coeliac disease and Veronica has the gene. He is determined to reach his fundraising goal, click here to support Paul.
Melissa Paxton has become the first runner to sign up for teh Sydney Running Festival in support of the Coeliac Research Fund. If you dont live in Sydney but would like to support her efforts please visit her fundraising page by clicking here . Melissa’s fundraising target is $500 - her reason for running? Her 5 year old daughter, Zoe, was diagnosed with coeliac at 11 months of age… Melissa is running for her with the hope of raising awareness & one day reducing the restrictions of every day food most of us love & enjoy…
Run for the Coeliac Research FundIf you are planning to take part in the Blackmore’s Sydney Running Festival, click on the image to find out how to support coeliac disease whilst taking part in an exciting challenge.
Celebrate 10 years of the Blackmores Sydney Running Festival and help us make a difference! This is your chance to run, jog or walk over the famous Sydney Harbour Bridge and finish at the iconic Sydney Opera. Get outside, get active and now go the extra mile and fundraise for coeliac disease as part of this year’s race.
Various times and dates depending on the event you take part in ranging from a marathon to the bridge run to the family fun run.
If you would like to run your own event by setting up your event page, invite friends to join in or you can take part in a larger activity, for example the large marthon events or you can quit for a cause and assign funds raised to the Coeliac Research Fund. You can even get some friends together and form teams - its easy, just click on the link below to go to our charity page.
Those who attended the Melbourne presentation breakfast by Professor Maki were delighted with the event. Brenda Palmer, better known as to TV viewers as the actress who bounces to a boom box surprised guests with her humour at the start of the event. The new children’s DVD was shown and many wanted copies which will be available soon.
Professor Maki provided an in-depth presentation on how the Coeliac Society in Finland has supported coeliac disease awareness and diagnosis and indicated that coeliac disease is in fact on the increase and our understanding that 1 in 100 of the population has the condition may need to be revised. Associate Professor Don Cameron and Professor Maki discussed the children’s DVD after the seminar. Their association goes back many years to the 1980’s.
The Deputy Premier and Minister for Health, The Hon Paul Lucas, MP attended the Brisbane Seminar with Markku Mäki and opened proceedings. The Minister was accompanied by Dr Jeanette Young, Chief Medical Officer.
Tony Bryer provided a first-hand insight of his son’s experience. Stephen was always unsettled during the night as a baby and would wake up often, and seemed to be in discomfort He didn’t appear to be thriving, always tired and listless and would wake up during the night even as a toddler As a toddler we were concerned about his height and bowel movements.
The diagnosis process involved seeing a GP and referral to a paediatrician. The paediatrician organized a blood test – the results were not strong, but we asked for an endoscopy anyway and arranged to see the Paediatric Endocrinologist. Again the results were not strong, but some damage was evident leading to diagnosis of coeliac disease. We were referred to the Dietician for diet advice re. coeliac diet and initial removal of lactose & fructose from the diet to aid repair of the villi.
Retrospectively,before diagnosis there was lack of sleep and concern over health and well-being. Particularly as a first child, we were unsure as to whether some symptoms were normal childhood occurrences or whether it was attributable to coeliac disease. After diagnosis there was minimal impact due to already having a coeliac in the family, however birthday parties, school activities and kindy presented challenges.
Stephen is now a healthy, normal 10 year old, who occasionally expresses a desire to not have to worry about choosing gluten free! As a parent having the peace of mind that his health issues are solvable and that the procedures are worth going though to be certain of a diagnosis rather than wondering when the symptoms are not really strong. Our feeling as parents was that he was unwell, but all along the way doctors felt that the symptoms weren’t strong enough for him to be considered a coeliac. It was only after the endoscopy that the results were conclusive. We feel that the symptoms being quite weak are probably due to the fact that with a coeliac at home, all of the family eat less gluten than would be in a normal family diet so he did not present a strong case.
The Perth Seminar and launch of Coeliac Awareness Week was a great success with over 115 attendees. Professor Maki’s presentation was well recieved by all and the showing of the ‘world premier’ of the new CRF DVD for children added value and entertainment. Dr Oyekoya Ayonrinde provided local information on coeliac disease diagnosis whilst Jane Hardy-Atkins related the story of her daughter, Ella, who was diagnosed at the age of three. She was not thriving as well as her twin brother, Ethan.
A big thank you is extended to the Coeliac Society of WA and their volunteers for their tremendous support of this event.
Integrated Sciences, Werfen Group, Inova Diagnostics and Nexpep Pty Ltd
Awareness Principle Partner Coles Supermarkets
For further information on the breakfast seminar series, please email admin@coeliacresearchfund.org
