I’m seeking your help to attend the Management and Wellbeing Conference in Warwick, UK being hosted by the Ehlers Danlos Support UK and Hypermobility Syndromes Association on the 30th of September and 1st of October 2017.
The aim of this conference is to provide members with practical health and wellbeing advice. A range of speakers are being organised to cover health concerns common to those with connective tissue disorders.
It will also give me the chance to meet with other people with EDS. Being able to talk with people going through the same thing will make a HUGE difference. The lack of support in Australia is very difficult at times.
Two very well known rheumatologists in the EDS world will be presenting at this conference. Dr Alan Hakim and Dr Hannah KazKaz will present on the new classification of Ehlers Danlos Syndrome (EDS) and the newly defined hypermobility spectrum disorders (HSDs).
There is NOTHING like this available in Australia.
"No other disease in the history of modern medicine, has been neglected in such a way as Ehlers Danlos Syndrome" - Professor Rodney Grahame
Professor Rodney Grahame is a rheumatologist who has a special interest in heritable disorders of connective tissue. He is considered the godfather of Ehlers Danlos Syndrome.
EDS patients are often NOT believed so getting advice from specialists that have a strong understanding of this complex disorder will enable me to have a better quality of life and self manage. I have often experienced this and is self destroying. I've had many physios give up on me as it was "too hard". Many doctors also WON'T treat you!
If I was to see one of the EDS specialists it would cost £300 ALONE! By attending the conference I will be able to talk with a range of specialists to get a much better understanding of managing this condition.
EDS is a journey
One of the hardest things with EDS is that our paths constantly change. We are forever learning to live within our capabilities. There is NO cure, so management is key. We are always modifying treatment to find the ultimate way of managing our condition. This can often mean changing health providers to find the one that works for us best.
Daily life of living with EDS
How someone with EDS feels each day is subject to change in an instant. One turn, twist, bend, step or reach can cause such pain that an entire day can be changed. You may see us walking normally one minute, then limping the next. It often changes from day to day.
EDS not ONLY affects our joints, but is a MULTI-SYSTEM condition. In addition to EDS, I also have Postural Orthostatic Tachycardia Syndrome (POTS). Sometimes the management of EDS and POTS can cause big issues. For example, if I increase my pain medication too much it can affect my POTS and feel very dizzy, light headed and suffer migraines. It's a VERY fine balance!
I was also recently diagnosed with Irritable Bowel Syndrome. This can be VERY debilitating. I'm now taking medication to help manage this and being very careful what I eat.
As a result of my accidents and EDS I suffer from chronic pain, mainly affecting my back, neck, right shoulder and left knee. I also suffer from anxiety and depression, which is well managed.
One of the key things in managing EDS is pacing ourselves. When we do too much we NEED to rest and recover.
Reason for crowd funding
For MORE than 10 years I have really struggled with my EDS and related conditions.
I have got as far as I can in Australia and REALLY need your help to get more specialised advice so that I can have a BETTER quality of life.
Often it means trial and error of different treatments, which can be extremely expensive and frustrating. I have exhausted all treatments for my knee and need to consult some orthopaedic surgeons who have more experience with EDS patients as there are more risks involved with knee replacement surgery than the average patient.
My Pain Specialist has given up trying further medications as he said I just react to them by LOOKING at them. This is ONE of many issues EDS patients face.
I have been under my knee surgeon for MORE than 20 years who is extremely experienced. EVEN he is at a loss what to do.
Also, my rehab team at Epworth Hospital don't think there's much MORE they can offer.
I'm in CONSTANT pain with my left knee and not a lot I can do apart from regular gentle exercise, using a walking stick, taking medications, having a healthy diet and balanced life.
In Australia we don't have ANY doctors that specialise in EDS. However, there are quite a lot in the UK and Europe that have a special interest in EDS.
As a result you have to see multiple specialists to get the treatment we need.
Read on more to find out more about my story or click "donate now" to help make this a reality.
Here is a break down of the costs involved in attending the conference and getting some opinions from some specialist knee surgeons in the UK and Europe. There may also be some additional costs that arise.
Flights $2000 (approx)
Travel Insurance $624
UK Surgeon £150
UK Accommodation £450
Italian Surgeon €250
Italian Accommodation €610
London to Italy flight TBA
Italy to Manchester flight TBA
French Surgeon €250
Lyon Accommodation €868
UK to France flight TBA
Please note at this stage these are ONLY estimates. All my appointments have now been confirmed.
Any excess funds will be donated to Ehlers Danlos Support UK. https://www.ehlers-danlos.org/
My EDS Journey
Before I had my car accidents I had a good job in London, UK working for a global wine company importing wine from New Zealand, USA, Spain, France and Argentina. I became sick from overwork, which resulted in me taking a year off work. Doing the job of 2-3 people just became too much!
When I was recovering, I developed an interest in silk painting, which greatly helped my recovery.
This is one of the silk scarves I painted.
In 2007 & 2008 I had 2 separate car accidents that changed my life forever. In 2008 I had a trochleoplasty on my left knee. The operation was a huge success, which enabled me to walk again and have a better quality of life. I am so grateful to my amazing surgeon who enabled this to happen along with my Sports Physician.
In 2011 I was diagnosed with a rare connective tissue disorder called Ehlers Danlos Syndrome (EDS), which was triggered by my accidents. I have Hypermobility Ehlers Danlos Syndrome.
Whilst recovering from my accidents I was looking for something to help me relax. In 2013 I was contacted by a close friend of mine in Glasgow, Scotland who was doing Scentsy and really enjoying it. She sent me a French Lavender wax sample along with some information and other samples. It was just about to launch in Australia. So, was a very exciting time. It really helped me relax and to focus on something else. Now I use my Scentsy diffuser and natural and essential oils which all help with my chronic pain and sleeping. This is mainly a hobby and purchasing products to HELP manage my chronic pain, fatigue & sleeping.
After much trial and error of conservative treatment my shoulder surgeon decided my BEST chance of a recovery was to have a posterior shoulder reconstruction. So in July 2014 I under went major shoulder surgery to repair damage to my shoulder. This operation has GREATLY improved my quality of life. When I went into hospital for my surgery I took in my Love warmer and a scented wax called “Happy Go Lucky”. Normally I’m not superstitious but I think it REALLY helped in my recovery.
In February this year I was in a position to be able to consider some work.
A few years ago I set up a business called Asia Market Makers, prior to having my major shoulder surgery. It focuses on helping business that are interested in exporting or importing to Australia, the UK, Europe and Japan. Our speciality is the Japanese market. I'm still in the process of getting clients on board. So, funding this trip on my own ISN'T possible.
PLEASE help me make this happen!
- Nicole Weatherley
- Sarah Tovey
- Robyn Wilson
- Yvonne & Jayden Park
- Carol Tseung
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more