A woman named Jemma Levy from London has Ehlers-Danlos syndrome and now she is dependent on the feeding tube for the rest of her life.
The 30-year-old will never be able to eat again and even a sip of water causes agonizing pain.
Jemma has been sick for multiple times and has been told that there is no other treatment to cure her. She experienced symptoms since age 12 and her digestive system is now paralyzed. Her husband Alex, 31, who works in finance takes care of her and the couple had to give up their dream of becoming parents.
Speaking to FEMAIL, Jemma said: ‘Alex has never complained, despite becoming my carer and having to do so much to help me every day,’
‘In the last 18 months my life has changed beyond recognition. My entire digestive system is paralyzed. 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.’
‘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 explained she experienced symptoms from the age of 12, the tests showed that her stomach could not empty itself properly. Her joints pop in and out of place as she also had an issue with her shoulders and back.
At the age of 18, she was diagnosed with a connective tissue disorder for her joints but it was not related to her stomach issues until 2018. At university, she survived seven keyhole surgeries to address intense pain in her shoulder and was forced to drop out.
She didn’t want to give up on her studies and decided to enroll at the Open University to study psychology and achieved a first-class honors degree.
She then studied a PhD at University College London, specializing in autism, but could not go to work regularly due to the worsening of symptoms.
‘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.’
‘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.’
‘EDS is an “invisible illness” – people cannot see it and therefore struggle to understand the huge impact,’
‘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 agonizing 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.’
‘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.’
‘Accepting the impact on our dreams of having children has been a really difficult journey,’ she admitted.
‘I struggle to put into words the impact EDS has had on my life. 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.’
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