Face #7: Zoe

Zoe, what’s your diagnosis?

hEDS – Hypermobile Ehlers Danlos Syndrome

How old were you when you started showing symptoms?

From birth, I had symptoms such as hip subluxations.

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

I was officially diagnosed at 28 years old, although it was raised as a possibility at around 17 years old.

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

My diagnosis goes hand in hand with a few other illnesses which have made it extremely difficult to have a ‘normal’ career. I am currently studying Visual Arts at Tafe and have had several of my works displayed in exhibitions.

How many health professionals are on your team?

I have 8 health professionals including GP, Physio, Neuro-ophthalmologist, Gastroenterologist, Cardiologist, Endocrinologist, Gynaecologist & Neurologist.

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

I go straight to my GP, he has personal experience with EDS and is always ready to try new treatments and research things that he may be unclear about. This has helped me find my “team”.

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

I have crippling light sensitive migraines, I cannot be near fluorescent shop lights or car headlights at night as these will trigger one. This makes shopping absolute hell and driving difficult at night time.

After failing to respond to any regular migraine treatments, I have had to get Botox every three months to reduce the severity of the headaches so I can do these simple things.

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

I once had severe neck pain requiring an Emergency room visit, after explaining my symptoms, conditions and medicine allergies to the Dr’s and nurses, they still gave me a medicine that is known to react badly with me.

I spent more than 24 hours violently ill because of the medication on top of the pain I was already dealing with.

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

Just because you can’t see it doesn’t mean it isn’t real.

Why is getting the message out about hypermobility so crucial?

I want people to know that I’m not lazy, I’m not laying on the couch because I want to watch TV. It’s not a holiday, it’s a prison sentence. I’m trapped in my body. I am in pain. Being flexible isn’t a party trick, this condition is a living nightmare.

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

When I was younger, it made me pretty good at ballet and gymnastics?!

Any other burning thoughts you want to add?

hEDS is the only one that has not been genetically coded. By finding the faulty gene, there’s a better chance of creating better treatments and possibly a cure. I would love to see funding put towards this by private or government parties.