Edinburgh woman with rare life-altering condition carves out future with her own business
An Edinburgh woman, whose life-altering medical condition makes everyday tasks potentially dangerous, has revealed how her terrifying ordeals led to her launching her own successful business.
Anne Sandilands, 40, suffers from classical Ehlers-Danlos Syndrome (cEDS), a genetic disorder that means her skin and joints are dangerously fragile. The rare condition means she regularly injures herself doing everyday tasks - including dislocating her fingers while washing up.
Just one in 20,000 people are affected by cEDS, with sufferers prone to bruising and slow‑healing, widened scars from even minor injuries. The condition, that she has lived with since birth, means the slightest fall, bump, or twist could leave her hospitalised - and she has endured several agonising accidents as a result.
It also leads to joint hypermobility and instability - meaning joints dislocate or partially dislocate with little warning.
Anne regularly dislocates her fingers just from picking something up, opening a jar or doing the dishes, and she has even suffered from knife wounds when her fingers "weren't working." Her condition has also led to her collapsing with a head injury when walking downstairs or stepping off a curb.
Anne said: "Mentally, it's very tiring because I have to plan every little thing. Even when I'm getting up to make a cup of coffee, I have to make sure that every joint is in the place it should be - because joints will just fall out of place if I'm not concentrating.
"I could easily fall and dislocate something. I dislocate my fingers from picking something up, opening jars or doing the dishes. I have to be really careful with it. There is very little keeping my joints in place, so I have to concentrate on doing that.
"Walking downstairs or off a curb have to be really careful as there's always a chance something will be in the wrong place. That's happened before and I've collapsed as I take the step so that leaves me with head injuries."
The condition can worsen over time and Anne often relies on crutches or a wheelchair to leave the house. She said: "Now it's fairly obvious when I meet people as I use a crutch, but it's something that comes up pretty soon when meeting people."
In 2020, one terrifying accident left her screaming on the floor for more than an hour. She said: "I was at a concert in an old church. I went to get a pint and I was shuffling through the pews to get to the bar.
"I didn't realise there was a one-inch step there, so my ankle turned over and my knee dislocated. I tried to use my arm to steady myself and that dislocated as well.
"I was on the floor screaming for about an hour and half, because it's incredibly painful, whilst waiting for the ambulance crew to help me off the floor. They had to cancel the concert."
Living with cEDS in Scotland can be an uphill battle, as Anne explained that there isn't a single specialist in the condition, but rather multiple doctors she sees for various treatments.
It can mean that she is sometimes recommended operations that aren't suitable, she said, so must always seek a second opinion.
‘It can take people with disabilities a long time to work out how to function in a world that wasn't designed for them’
But Anne has refused to let cEDS define her life - and has carved out a successful career that works around her condition. After studying sculpture at Edinburgh College of Art, she began creating jewellery that she sold online.
She later invested £12,000 in a laser cutting machine, which transformed her acrylic jewellery line, called Obscenerie.
Her designs are inspired by animals and wildlife and are sold online as well as in shops across Edinburgh and Stirling.
Anne said: "I think it can take people with disabilities a long time to work out how to function in a world that wasn't designed for them.
"I was devastated when I realised that getting a traditional job wasn't going to be an option for me. I even felt ashamed of my disability. I think I'd say to anyone else going through that to first and foremost be kind to themselves.
"Once you can work out a way to live with your difficulties, instead of spending all your energy fighting against them, then hopefully you can start to find your passions and follow them."
You can visit Anne’s website and Instagram page for more information about her business.