A woman has shared harrowing photos of her emaciated body to raise awareness of the rare genetic condition that has left her unable to eat.
Emily Monk, 34, from Telford, Shropshire, suffers from Ehlers-Danlos syndrome (EDS), a group of conditions that affect connective tissue, which provides support in skin, tendons, ligaments, blood vessels, internal organs and bones.
As a result, she is unable to eat and is kept alive by a nutrient-rich liquid that is injected directly into her veins.
Now weighing just 5st 7lbs, Emily told how the condition cost her up job and led to the breakdown of her marriage, leaving her with ‘nothing’ and on the brink of suicide.
She said: ‘I’d never heard of EDS before I was diagnosed, but it has cost me everything. I hope that by sharing these photographs, I can raise awareness of the condition that has stolen my life.’
Emily Monk, 34, from Telford, Greater Manchester, suffers from Ehlers-Danlos (EDS). She told how the condition cost her up job and led to the breakdown of her marriage, leaving her with ‘nothing’. Pictured, Emily graduating from the University of Birmingham, before the diagnosis
Now just 5st 7lbs, Emily is unable to eat and is kept alive by a nutrient-rich liquid that is injected directly into her veins. Pictured, Emily was previously fed through a tube through her nose
Emily has shared these harrowing photos of her emaciated body to raise awareness of the rare genetic condition that has left her unable to eat. She weighs just 5st 7lbs
Emily has struggled with her health since adolescence but worked hard to overcome any setbacks to succeed.
‘From the age of 14 I was beset with issues,’ she recalled. ‘Mainly joint pain in my shoulder and hip, and problems with my digestion and keeping myself nourished, but I was determined to overcome everything that life threw at me.
‘I studied hard, graduated from the University of Birmingham and then built a successful career as a geotechnical engineer. I met the love of my life at uni and we got married in 2011.
In 2014 Emily (left before the diagnosis) faced a brush with death when her lungs collapsed. She was diagnosed with EDS in hospital. Right, Emily during one of many hospital stays
‘But even being a newlywed wasn’t plain sailing – the week after we returned from our honeymoon in Crete my digestive issues meant I had to have an operation to remove my bowel.’
Emily, pictured on a day out before the diagnosis, said EDS has ‘cost her everything’
In 2014, then aged 29, Emily faced a brush with death when her lungs collapsed. She was taken to hospital, where doctors made the EDS diagnosis.
There are several types of EDS, but common factors include increased joint movement, and stretchy skin or fragile skin that breaks or bruises easily.
Symptoms can be mild for some sufferers, but disabling for others. They can cause internal bleeding, dislocated joints and damage to vital organs.
Emily says: ‘It made sense. As a child I was good at gymnastics because I was so supple. But I’d given all that up after a knee injury and my health went downhill from there.’
After the diagnosis Emily was told she would have to give up her career. She also learned she would never be able to carry children.
Last year, Emily faced further heartache when she contracted sepsis during a six-month long hospital stay, leaving her blind in one eye.
Emily was active and outgoing as a child and excelled at gymnastics, but her health began to deteriorate when she was around 14. Pictured, Emily as a child
After she was discharged, her marriage collapsed and, in the midst of a nervous breakdown, Emily tried to take her own life.
Emily says: ‘I’d lost absolutely everything. I was sectioned for my own safety and put on 24-hour watch.’
After her eventual release from mental health care, Emily had to leave her house in Worcester and return to the family home in Telford to live with her parents.
She says: ‘I’d gone from being a successful, married woman to becoming totally dependent on my mum and dad for day-to-day care.’
Emily will be back in hospital in the next weeks to undergo a hysterectomy.
‘My situation is desperate,’ continued. ‘People think because I’m bright and talkative, “she’s all right” but the reality is my condition is very complex and very few people understand it, even within the medical profession.
‘There are times I’ve felt completely isolated. I’m expected to just suck it up and carry on, and some days I do ask myself, “why do I bother?”
‘But I’ve got to be strong and keep going. I’d like anyone else with my condition or other hidden illnesses to get in touch to talk, share stories and advice.
‘Getting people together face to face who have hidden illnesses and trying to make friends is really important, because it’s so hard for us.’
- For confidential support call the Samaritans on 116123 or visit a local Samaritans branch, see www.samaritans.org for details.