Sunday 1 July 2018

Ehlers-Danlos Syndrome: A message to the newly diagnosed

I first wrote this piece for Irish EDS & HSD as part of EDS awareness month in May, and thought I would share it here too. See the original article here:

If you are newly diagnosed, hope you find it helpful. 

And if you do have either EDS or HSD and would like to write something for the Irish EDS & HSD page, please get in touch through IM'ing the Facebook page!


For anyone that has been newly diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, I know you must be feeling a mix of emotions -afraid of what the future holds, but also relieved that this long mystery has finally been resolved. Like many sufferers, like in my case, you may have waited years for this part of the puzzle to be answered. Now you’re faced with even more questions, and you may come to realise that there isn’t a lot of medical help in Ireland. This makes the future even more daunting than it was before.

You could be wondering what was the point in fighting for a diagnoses all this time, what was the point if there is no cure and you’re surrounded by specialists who tell you they are not qualified, ask you to spell the condition, or are just very dismissive in general. 

I know you’re tired, but I promise things get better. Here’s how I have coped the last few years since my diagnoses:

1. Find online support groups.
There are two Irish groups and also one for parents of children who have been effected by EDS and HSD. There are also tonnes of UK and international ones, but Irish patients understand your battle even more so than anyone else. They’re not only great places for general support, but also for finding various specialists who know about your condition. Even if you rarely post in these groups, it’s nice to know you are not alone. 

2. Find a (at least some-what) qualified physiotherapist and a good GP.
Easier said than done, right? This will very much depend on where you live, as Ireland can be a bit of a post code lottery when it comes to healthcare. I spent years looking for a physiotherapist who was confident enough to keep me on, one that had even heard of Ehlers-Danlos Syndrome, who knew about joint hypermobility, who I didn’t scare the absolute bejesus out of. Even before my diagnoses all I heard was, “I’m sorry, you’re too deconditioned for my expertise”, “You need a rehabilitation programme as an in-patient”, and so on. It was very frustrating, as they were apologetic but couldn’t offer me help or even point me the direction of where to get help. I’ve lost count of how many physiotherapists I was forwarded on to over a period of ten years. I eventually found one willing to take my case and she has been so helpful with appropriate excises, encouragement and accessing things like braces and aids. Don’t lose hope and please keep fighting. A physiotherapist who knows about hypermobile joints will help you the most through all of this. 

I was lucky enough to accidentally find a GP who is truly wonderful. Who will take a risk, ask colleagues for advice; who is actually interested in my condition and my well-being. Waiting lists can take years, and in between all those wait times you may need medications and advice as to not become even more deconditioned. A good GP and physiotherapist will become your main health care providers. If your GP is not willing to adapt, consider changing to a new one if at all an option where you live.

3. Vent.
Talk to friends, keep a diary, write a blog… anything that helps you release any pent-up anger. Allow yourself to cry. It’s been a long diagnoses journey and you thought the end was in sight, only to realise it was only the beginning. You are allowed feel frustrated, upset, confused. Let yourself breath and acknowledge those feelings. You don’t have to be positive all of the time. If you are really struggling and the support groups aren’t enough, consider counselling. 

4. Above all - 
Don’t be so hard on yourself.

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