You’re always on the move’, my sister Sian, then 13, laughed.
Life was an adventure and I was always horse riding or doing gymnastics. But in my 20s I began to feel awful pains in my body.
Eventually diagnosed with a chronic nerve pain condition, trigeminal neuralgia, I had open brain surgery aged 24.
After recovering and moving to Perth from England, I met and married my husband Isaac, 30. On our honeymoon, we hiked and explored Australia and southeast Asia.
But within a year I was in so much pain I couldn’t work, drive or even stay upright for any time.
Worried, I scoured medical journals online.
I’ve got Ehlers-Danlos Syndrome, I soon realised.
Seeing a specialist, the diagnosis was confirmed.
The connective tissue disorder weakens tendons and ligaments which hold the body together, and meant my joints moved too much.
‘We’re concerned about your neck,’ the doctor said.
Even slight movement gave me brain stem compression, where the veins under my skull narrow and there is a decreased amount of fluid around my brain. It’s like my skull is crushing my brain, pushing it down my spine.
Now, a year after my diagnosis, I spend more than 20 hours a day lying down in a neck brace. Any movement is agony.
If I sit or stand up, I can faint or vomit. I have constant headaches, memory and speech problems, and pins and needles, too.
I’d give anything to hike like I did on my honeymoon, I often think.
I appreciate small things now. I celebrate if I’m able to bathe, watch TV, listen to a song or put on clothes.
‘You’ve been so strong,’ Isaac says.
When I’m feeling well, we go to a cinema with reclining seats. I have to pre-rest and recover for days after.
However, there is hope. I’m eligible for neurosurgery in Barcelona. Without it, I’ll deteriorate until I can’t speak, swallow or breathe.
The operation would pin my neck and skull together. I will lose the ability to move my neck, but it’d be worth it to have some relief from my debilitating symptoms and I could think about starting a family and finishing uni.
Now, I’m trying to raise the $100,000 I need for the trip to Spain and the surgery.
With a long road ahead, there’s finally light at the end of the tunnel. ●
Help Erin reach her goal by donating on Go Fund Me.