Ehlers-Danlos Society Learning Conference - Sydney Dec 2018
Updated: Dec 13, 2018
What: Ehlers-Danlos Society Learning Conference
Where: Macquarie University, Sydney
When: 7 - 9 December 2018
Who: Ehlers-Danlos Society team and speakers from Australia, England and USA
Why: Spread the word
First time down-under!!! Ehlers-Danlos Society in Australasia.
The first Society conference outside of Europe and USA has touched down.
There was a lot of science and formal teaching and learning - more about that in the days to follow. This post gives an overview of my first thoughts, some of the most useful take-home points and some "real life" lessons. They may not seem as exciting and “useful” as the science, but in many ways these are the things that are most practical and encouraging.
Day 1 (Friday 7 December) was for patients and those caring for them. What was quite exciting in a way was to see the number of doctors, physios, nurses, etc. who were there because they either have EDS themselves or they are married to someone with EDS or they have a child with EDS - so these people really get it. They live with EDS - and they are passionate professionals because they are directly impacted in a personal way.
Day 2 (Saturday 8 December) was for Professionals. Lots of physios, several doctors and a mix of other health professionals with a focus on research.
EDSers - You are not alone.
A common story - "I live in New Zealand and I am so irritated/sad/disappointed that my EDS medical care is far from optimal and it has been so difficult to get a diagnosis - and now that I have a diagnosis, accessing the right care/good care is fragmented or next to impossible".
The reality is that it is quite clear that the same issues are there in Australia, the UK and around the world. So many stories of missed diagnosis for years, damaging health care episodes along the way and health care professionals who know nothing or dangerously little about hypermobility and EDS.
The Ehlers-Danlos Society and its supporters have made huge gains in the last 2 years around the world. Look how the Society’s following has grown since things really kicked off in 2016 - such growth in 2 years!!
In the next few years the Society is planning conferences in places as diverse as Tokyo and Rome as they reach out across the globe.
There are new and progressing global initiatives. EDSers are being asked to sign up for the Global Registry so that the Society can know what the real incidence of EDS is. When you sign up at https://www.ehlers-danlos.com/eds-global-registry please have on hand some kind of medical document - like a letter from a specialist to your GP that confirms your clinical diagnosis of EDS and your EDS type.
The Society also has a register of Health Professionals that have an interest and expertise in EDS. There is a New Zealand page - hopefully the NZ listings will grow soon. https://www.ehlers-danlos.com/medical-professionals-directory/
SOME BROAD TAKE HOME POINTS
Here are some of my thoughts and musings about the general things that the experts think seem to underpin all your efforts to improve your EDS life.
Build a framework for your life with EDS with a good foundation. Ehlers-Danlos Syndromes and Hypermobility so often occur in association with many other issues that are significantly affected by dietary intake and metabolism - so nutrition and a few other basics are key.
Quote of the conference from Dr. Heidi Collins - a rehabilitation specialist doctor from the USA who herself has hEDS - as do her teenage daughters.
She summarises your approach to eating by quoting from Food Rules by Michael Pollan:
Eat food, mainly vegetables, not too much.
It's not a specific diet like paleo, etc - it's about eating real food that is cooked well. Lots of plants. And just enough to stop you being hungry. Good nutrition is a fantastic platform.
Yes - sleep. Understood - pain, medicine side effects, anxiety, etc. get in the way of sleep. But figure out ways to get on top of those things enough to get some good sleep so that you can then work on the next level of sorting out your symptoms.
Overall body deconditioning and weak muscles around joints are such a huge problem for EDSers. Work on overall body conditioning and strengthening muscles around joints - but start really slow and work up really slow - don't get injured on the way and allow time to recover - but do something - more details in a later post.
BUILD YOUR TEAM
As you navigate the uncharted waters, look for and build a team around you that are prepared to work with you and be on your side.
Ultimately, you are your EDS specialist. You know a lot more about EDS than a lot of health professionals and you know more about your particular zebra stripes and flavour of EDS than anyone else. So, find ways to be your own team leader, specialist, therapist, activist, advocate. But don't try to do it alone - build a team around you.
When you see a GP, specialist physiotherapist, osteopath, etc for the first time, make sure you take with you a short (1-page) document that gives the basics or your diagnosis and also tells them what it is that you hope to get from that particular visit and from them in the medium term. A future blog post will give an example of what this might look like.
Be realistic in what you expect near the beginning - only try to deal with one or two goals at a time. But over time, make a plan to work through the rest.
FIGURE OUT WHAT WORKS FOR YOU
You are You.
Read and listen to the science. Follow logical medication and other treatment plans.
Find what works for you. Remember that most individual interventions will only make a small difference. Many of these together will make a bigger difference. You are aiming to get your life back - every little bit helps.
Don’t be scared to try complementary or alternative options, especially those that EDSers write about and recommend on support group sites - but don't be sucked in by people, supplements, machines or programmes that promise a rapid cure or rapid major improvement.
Keep a diary or journal - see which foods, which exercises, which medicines work and which make you worse.
EDUCATE THE PROFESSIONALS
Provide a platform for your health care professional to be encouraged to read and learn about hypermobility and EDS. Give them a few links to useful information - as an example you could give them a link to this web site https://www.matpre.nz/ehlers-danlos and the the Professionals pages at https://www.ehlers-danlos.com.
You are not alone.
The EDS message is getting out.
There are doctors, physios, nurses and others who now know about EDS. There are a few places in the world where EDS-specific services operate - we are learning from them and looking for ways of doing this closer to home.
Over the next few weeks there will be some more detailed notes and thoughts from the individual conference sessions.