REAL FACES of HYPERMOBILITY:
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?
Respiratory & Sleep Physician
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?
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.