Emily Monk, from Priorslee in Telford, has bravely lifted the lid on the heartbreaking reality of living with the debilitating Ehlers Danlos syndrome, and the terrifying period when she was left without food this summer.
EDS is a group of rare inherited disorders that affect the connective tissue. It can affect skin, tendons, bones, blood vessels, ligaments and internal organs.
There is a broad spectrum of severity. On one end you have celebrities including pop star Sia, actress Jameela Jamil and comedian Russell Kane who, in their public lives, appear to be able to still function strongly.
But on the other you have Emily.
A talented gymnast when she was a youngster, before studying hard, getting work as a geo-technical engineer and having a happy marriage. It all started to be taken away from Emily when she was diagnosed, aged 29.
Now 34, she said: “From the age of about 14 I started having problems with my digestion and keeping myself nourished. I had other issues as well with my shoulder, my hip and veins.
"Doctors thought it was all separate but it turned out to be this. I was really active when I was younger. I was a gymnast. It’s quite common for people to have this to have been gymnasts because of how flexible you are.
"I studied hard. I worked hard. I’m now 34, jobless and my husband left me and I’m living with my mum and dad. I’m not able to have a family.
"Life doesn’t make much sense sometimes.”
Due to her condition, Emily has to be fed through a drip. She is completely dependent on bags filled with liquid containing all the nutrients she needs. The liquid is pumped directly into her bloodstream while she sleeps.
In the summer, Emily was one of around 500 patients in the UK who weren’t getting their nutrition after providers Calea were subject to an inspection – a crisis which was described by the NHS as a “national emergency”. The medicines safety body – the Medicines and Healthcare Regulatory Agency – found bacterial contamination in the production area and said the facility’s manufacturing processes did not meet guidelines the MHRA had set out in 2015.
No contaminated bags were discovered but the MHRA said there was a potential risk to patients.
Emily said: “I have to have this because my body won’t break down normal food. That is the only way I’m fed.
“My food wasn’t turning up. I had to chase people for it. I was six stone and I ended up going down to five-and-a-half stone. Over a two-and-a-half month period I had 15 days of no food. There is no alternative for me. I just had to starve. I was absolutely terrified. I had to go into hospital and have an emergency drip.
“When it wasn’t delivered I phoned the hospital and told them. They said if I pop in between 5pm and 6pm, they might have a couple of bags. I can’t just 'pop' anywhere.
“They are doing a better job now but it leaves you on edge. I can’t say I’m looking forward to Christmas with the delivery situation.”
It’s a desperate situation for Emily, which takes its toll on her physically and mentally. She has criticised the lack of mental health support available to people in her situation as well as others.
“I had a nervous breakdown and tried to kill myself,” she said. “I saw the crisis team and was referred to the mental health team in Telford. They didn’t have any appointments. I had to wait months and months.
“People think because I’m bright and talkative, ‘she’s all right’. I lost it all and there was no support. I couldn’t have been much more alone. We’re expected to just suck it up and carry on.”
She has offered for others with her condition or 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,” she said.
If you would like to contact Emily, her email address is firstname.lastname@example.org
For more information on the condition, see these websites: