Face #8: Skye

Skye, what’s your diagnosis?

Hypermobile Ehlers Danlos Syndrome

How old were you when you started showing symptoms?

I had terrible pains in my legs and hips when I first started walking. I started having tachycardia issues and dislocations at 13.

And how old were you when you got your official diagnosis?

I was 18.

Are you able to work? If so, what do you do?

I work three days a week at a primary school as a teacher’s aid.

Did you have a career that got cut short? What was it?

Yes. My dream was to work in childcare. I did my childcare course at 17, and then I realised I just couldn’t work with little children without dislocations and pain.

Do you have a family of your own?

No, I have chosen not to have children as it would put my health at risk too much and it’s too much of a chance to pass my condition on.

How many health professionals are on your team?

5: my physiotherapist, pain psychologist, GP, dietician and Cardiologist

Which of those health professionals is your “go-to” person when you have questions, or things are going pear-shaped?

My GP and my physiotherapist as she is the saviour of my muscles haha.

What’s the most problematic symptom of your hypermobility condition?

My dislocations have been very problematic although my muscle pain is the worst part. It takes a lot of pushing through pain to walk very far these days, and I used to walk over 5kms easily.

Have you had bad experiences with ignorant health professionals? Can you tell us about one of those experiences?

I think my worst have been with Rheumatologists, two in particular although both in the same building. One of them had not looked at the ultrasound properly and thought that I had severe swelling in my joints and instantly diagnosed me with rheumatoid arthritis and tried to put me straight on Methotrexate. After researching this drug I said no and went back to see her, and she said she had made a mistake, I’m hypermobile and she can not help me anymore. She then referred me to her colleague, and after seeing a geneticist and getting my hEDS diagnosis, he told me that it’s “just a bit of hypermobility” and I don’t need to see anyone else to follow up and then dismissed me.

What’s the one thing you want the world to know about hypermobility?

It’s not just about the stretchy skin and bendy joints !! There’s so so so much more involved in hypermobility, and it’s definitely not always visible!

Why is getting the message out about hypermobility so crucial?

So many people are misinformed and way too many people are going far too many years before a diagnosis. So many people are scarred from doctors not believing them and telling them that it must be in their head as they don’t know the correct information about hypermobility and the Ehlers-Danlos Syndromes.

Are there/have there been any plus sides/benefits to having your hypermobility condition?

Yes, in a strange way. I have such a different outlook on life and on the world. I’ve also realised how strong I am, even when I don’t feel it. I can see that the small goals are just as important as the big goals, and I now know that I want to live my life the absolute best I can.