Thursday 4th June
Day 1, Prologue
Monaco 15.5km
We are finally here at the starting line of the 2009 Tour de France route and can’t believe it after all these years of hard work and preparation.
Monaco will be a great place for the 14km Tour de France prologue so make sure you watch it on TV on the 4th of July as it will be a great spectacle.
We had a few minor hiccups, the first only about 500m metres into the ride, when a policeman wouldn’t let us continue on and made us take a quick detour. The second was a one-way street which we slowly and carefully navigated so we could stay as close to the true course as possible.
Prior to our ride I had been in touch with some Crohn’s researchers from TX Cell located in Sofia Antipolis which is halfway between Monaco and Brignoles (the stage 2 start and finish towns). We had arranged to meet and take a tour of their facility and learn more about their climbing project to raise funds and awareness of Crohns Disease. So, we decided to ride the first half of stage 2 in the afternoon so that we could meet them.
Day 1 was characterised by numerous wrong turns and being lost more than being on track so we didn’t meet the TX Cell team until about 9.00pm. Their CEO Fred gave us a great tour of their facility and explained their cutting edge research. Even after making them wait all night for us they took us out for a great dinner. We look forward to following their progress and research results and to catching up with them again after the ride.
It was a very long day and we are exhausted already but we’re excited to be here and enjoying the beautiful scenery.
So what’s the project all about?
We are a group of ordinary people trying to do something huge to capture people’s attention and raise funds and awareness of Crohn’s Disease (Crohn’s and Colitis are both chronic digestive system diseases commonly referred to as IBD – Inflammatory Bowel Disorder).
We will provide a “daily Crohn’s fact” and a “daily Crohn’s profile” on the website (along with our daily updates) to help raise awareness. We also have a direct link to a secure portal for people to make donations.
Also, thanks to our great sponsors we have a number of prizes up for grabs so have a look at our Competitions page for more details.
Crohn’s Fact
1. Crohn’s disease is a chronic, inflammatory condition of the gastrointestinal tract. At present, there is no known cause or cure.
Crohn’s Profile
Name: Kylie
Age: 34
Lives: Gold Coast, Australia
Age of Diagnosis: 27
My Story
7 years ago I packed my backpack bound for Europe for the trip of a lifetime. I lasted 1 month in London before symptoms started: excruciating abdominal pain, no energy, no appetite and I lost 12 kilos. I pushed myself to do some temp work to pay for visits to the doctor and support myself. I was alone, very sick and I had no idea what was happening to me. I was sent away from medical centres being told my symptoms were from the change of food and water in a new country. Four months later after many misdiagnosis I was told I had Crohn’s Disease.
After a year of fighting the disease and little improvement, doctors sent me home to Australia. I spent the next four years trying different medications but never really found relief. I came to a point where I wanted to see if my body could stand up to this disease on its own. 21 days off all medication I ended up in emergency in hospital. In and out of hospital over the next few months my body rejected all medications. I spent close to a year at home unable to work or leave the house.
That was 18 months ago now and since then Infliximab was placed on the PBS. I got approved for the treatment and visit the hospital every 8 weeks for my Infliximab infusion. I call it the drug that gave me my life back – I was able to go back to work and start living again.
This treatment is still only a band aid, I still take Immune suppressants everyday and I still suffer daily with pain in my joints. I have days where I can’t pick up a knife and fork to eat my dinner because of the arthritis in my hands. Despite the pain and lack of energy I still push myself to get through every day with a smile on my face. These are the cards I have been dealt, and I have spent 7 years perfecting my “I’m fine” poker face.
My message
I have spent 7 years keeping my disease a secret because I never wanted anyone to pity me or treat me differently. I realise I am not helping anyone by staying silent. In the past year during my treatments, I have met many serious sufferers of this disease and now I know the only way to help myself and my friends is to share my story and help raise awareness. We need your help, please dig deep and donate anything you can, read our stories, support the Crohn’s Crusaders, tell your friends and help us find a cure.
Today’s images can be viewed here
Sponsor Profile:
Sponsor Name: VSL#3
Sponsor Level: Naming Rights Partner
Sponsor Website: www.vsl3.com.au
Orphan Australia are distributors of VSL#3, the world’s most concentrated probiotic.
As a company focused on providing quality gastroenterology products which can change peoples’ lives for the better, we recognise the challenges and battles of living with a debilitating chronic condition. Throughout Orphan Australia’s history, it has always been our mission to deliver more therapeutic options to improve patient outcomes. We therefore support the efforts of the Crohn’s Crusaders in their quest to increase public awareness of Crohn’s Disease and simultaneously raise funds to further research into this area. For more information about Orphan Australia, or how VSL#3 may restore balance to the body’s natural bacteria and help the digestive system work more efficiently, call 1300 656 755 (within Australia) or +61 3 97695744 or visit www.orphan.com.au.
