The woman who will NEVER eat again: 30-year-old with Ehlers-Danlos syndrome is hooked up to a feeding tube 22 HOURS a day – and even a sip of water causes agonising pain
- Jemma Levy, 30, of London, had to wait 17 years for her Ehlers-Danlos diagnosis
- Experienced symptoms since age 12 and entire digestive system now paralysed
- Now spends life in hospitals and lying on sofa on drip feed machine for 22 hours
- Husband Alex, 31, is her carer and pair have given up dream of having children
- Jemma dependent on tubes for rest of her life but is determined it won’t beat her
A young woman with Ehlers-Danlos syndrome who needs to be hooked up to a feeding tube for 22 hours a day has revealed she will never be able to eat again – with even the smallest sip of water causing her agonising pain and nausea.
Jemma Levy, 30, from London, experienced symptoms for 17 years before receiving an official diagnosis – a wait she believes has worsened her condition.
Her digestive system is now paralysed and she is sick multiple times a day, even without eating, and has been told there is no other treatment to help her and she’ll be dependent on tubes for the rest of her life.
It means Jemma and husband Alex, 31, who works in finance, have been forced to give up their dream of starting a family, and he is now her carer.
Jemma Levy, 30, from London, pictured with her husband Alex, experienced symptoms for 17 years before receiving an official EDS diagnosis – a wait she believes has worsened her condition
Brave Jemma’s digestive system is now paralysed and she is sick multiple times a day, even without eating, and has been told there is no other treatment to help her and she’ll be dependent on tubes for the rest of her life
Speaking to FEMAIL, Jemma said the unrelenting support she receives from Alex and her friend and family is the sole reason she has the strength to keep fighting.
‘Alex has never complained, despite becoming my carer and having to do so much to help me every day,’ she explained.
‘In the last 18 months my life has changed beyond recognition. My entire digestive system is paralysed. It does not work.
‘I spend my life in hospitals, having operations, at doctors and lying on the sofa. I spend 22 hours a day tied to a drip machine to “feed” me. I vomit constantly, even though my stomach is empty as everything has to go through my feeding tube.
Jemma met husband Alex (pictured) through mutual friends when she was 22 and describes his support as ‘incredible’
Jemma’s close friend Claudia Green (pictured together), who has known her since she was two and was bridesmaid at her wedding, has set up a GoFundMe page to raise money for the charity Gasroparesis and Intestinal Failure Support (GIFT) on her behalf
‘I am rarely alone and need constant care and support from my family.
‘I will never be able to eat again. I will never have that sushi, chocolate or birthday cake I used to live for. I will always be reliant on tubes and medicines to survive. But with my family and friends by my side, EDS will never, ever beat me.’
Jemma told how she experienced symptoms from the age of 12, with tests showing that her stomach could not empty itself properly.
She also had issues with her shoulders and back, as her joints are unstable and ‘pop’ in and out of place.
Jemma now spends her life in hospitals, having operations, at doctors and lying on the sofa. She is hooked up to a drip machine to ‘feed’ her for 22 hours every day
After years of physiotherapy, surgeries and medical appointments, she still had no idea why she was prone to so many problems – or that they were all related.
Jemma missed a large part of her first year at secondary school as she was in and out of hospital, but was still a straight A student.
When she was 18 she was diagnosed with a connective tissue disorder for her joints, but it wasn’t connected to her stomach issues until 2018.
While at university she endured seven keyhole surgeries to address excruciating pain in her shoulder and was forced to drop out.
Pictured with Alex, Jemma missed a large part of her first year at secondary school due to her illness, as she was in and out of hospital, but was still a straight A student
Refusing to give up on her education, Jemma enrolled at the Open University to study psychology and, despite her struggles, achieved a first class honours degree.
She then studied a PHD at University College London, specialising in autism, but her symptoms continued to worsen to the point where she couldn’t get to work regularly.
‘I had so many terms for each issue EDS caused – gastric dysmotility, arthritis, degenerative joint disease – but no reason,’ she said.
‘It took 17 years of medical issues before I was told why these things were happening. The diagnosis only happened once my stomach issues became so severe.
‘A gastroenterologist looked at my history of joint issues and touched my very stretchy skin and said it sounds like EDS. This was then confirmed by a specialist consultant.
Pictured on her wedding day, Jemma studied a PHD at University College London, specialising in autism, but her symptoms continued to worsen to the point where she couldn’t get to work regularly
Jemma will never be able to eat again – despite ‘living for’ cake, sushi and chocolate – and even a sip of water can make her vomit
‘It was such a relief to have a reason and to start to understand why my body has the issues it has. I felt empowered – if I know what it is, I can start to deal with it.
‘It really helped me focus on making plans to help, rather than feeling lost and without anything to help guide my treatment.
‘I strongly believe that if the doctors had told my parents when I was 12 that my delayed stomach emptying needed monitoring and could become more severe, I would not be in the state I am now, where nothing more can be done to help.
‘By the time I got help, the paralysis of my digestive system was so severe that none of the treatment options or surgeries worked. If I’d have known earlier, something could have been done.’
After her official EDS diagnosis, Jemma said she felt ’empowered’ and it helped her focus on making plans to help, rather than feeling lost and without anything to help guide her treatment
Jemma added that the official diagnosis also enabled her to explain to people what was wrong, as she was often told she ‘didn’t look ill’.
‘EDS is an “invisible illness” – people cannot see it and therefore struggle to understand the huge impact,’ she said.
‘My illness was completely invisible until the feeding tubes, but it was just as difficult. A smile on my face does not mean I am not in agonising pain – it just means I want to pretend for a few minutes that I am just Jemma, not “sick Jemma”. My smile is my mask to show the world I’m still me.’
Jemma said her illness was ‘completely invisible’ until the feeding tubes, but it was just as difficult
Jemma claimed her illness is far harder for her parents and Alex, whom she married in August 2015, to deal with than it is for her.
‘Anything I go through cannot compare to the pain I see in my parents’ eyes when they watch me in pain,’ she said.
‘It hurts them and Alex far more than any physical symptoms can ever hurt me.’
Her constant nausea, vomiting and pain along with the limited nutrition and hydration she receives through her feeding tubes also makes it ‘too risky’ for her and Alex to try for a baby.
To keep her spirits up and encourage her to keep fighting during her frequent hospital visits, Jemma told how she watches videos and looks at pictures of their wedding day
‘Accepting the impact on our dreams of having children has been a really difficult journey,’ she admitted.
To keep her spirits up and encourage her to keep fighting during her frequent hospital visits, Jemma told how she watches videos and looks at pictures of their wedding day.
‘I struggle to put into words the impact EDS has had on my life,’ she said.
What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect the connective tissue.
Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
Different types of EDS are caused by faults in certain genes that make connective tissue weaker.
Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both.
Sometimes the faulty gene isn’t inherited, but occurs spontaneously.
EDS can affect people in different ways. For some the condition is relatively mild, while for others their symptoms can be disabling.
Some of the rare severe types can even be life-threatening.
Figures suggest between one in 5,000 and one in 20,000 people have the condition.
Source: NHS Direct
‘Like many things, it’s a massive spectrum – many people with it have only a few symptoms and aren’t majorly affected, but a small proportion of people have huge life-changing impacts of having “dodgy” muscles and collagen.
‘EDS is not the issue as such, it’s the conditions it causes that are life changing.’
Jemma’s close friend Claudia Green, who has known her since she was two and was bridesmaid at her wedding, has set up a GoFundMe page to raise money for the charity Gasroparesis and Intestinal Failure Support (GIFT) on her behalf.
‘All I wish for, for my birthday is to give her hope and let her know her daily epic struggles could improve in some way,’ Claudia said.
‘She’s an exceptional human being who has given me so much bravery and helped me overcome so many hurdles by her example of fearlessness, I’d very much like people to acknowledge that this is chronic, this is real and most would never be able to put up the fight she does daily.’
Describing Claudia’s kind gesture as ‘the most amazing, humbling surprise’, Jemma said: ‘I am so lucky that Claudia has been by my side through all the good times and the difficult times. I am completely overwhelmed by the kindness of everyone who has donated.’
While Jemma will never have a ‘normal’ body, she is determined to make her life now her ‘new normal’.
‘I will never go back to how things were. My life will never be “normal” again,’ she said.
‘But it will be my new way of living. Not just surviving, thriving. Actually getting out there and living life.’
For more information about the GIFT charity, visit https://www.giftuksupport.org/
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