Face #14: Kirsty

Kirsty, what’s your diagnosis?

Hypermobile Ehlers Danlos Syndrome.


I had been diagnosed with the wrong type and was re-assessed in London, UK in October 2017.

How old were you when you started showing symptoms?

About 13-14 years of age.

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

I was 37

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

A little bit. I have set up my business in export consulting and teaching Japanese, but had to take a step back recently.

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

Yes, working in the corporate sector, in the wine industry.

You obviously have a family of your own, can you tell us more about that?

No. I’ve been advised not to start a family of my own.

How many health professionals are on your team?


Knee Surgeon

Shoulder Surgeon

Sports Physican

Pain Specialist

Rehab Physician


Respiratory & Sleep Physician



Pain Psychologist

Occupational Therapist



GP (very rarely see)

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

My Sports Physician

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

Chronic pain

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

Yes. I was seeing a new specialist and wanted to try some new medications. He didn’t listen to me about my allergies and as a result ended up in ED twice with anaphylaxis from 2 different medications in the same family. The second time I ended up being hospitalised for 4 days.

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

It doesn’t just affect your joints!

Why is getting the message out about hypermobility so crucial?

There’s a huge lack of awareness in both the medical and general community, which results in a lot of patients being fobbed off and not getting the care they so desperately need. That needs to change!

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

Not that I can think of!

Any other burning thoughts you want to add?

Living in chronic pain greatly affects your mental health.