A young woman who vomits up to 20 times a day due to a rare genetic condition has told how she will slowly starve to death if she doesn’t receive life-saving treatment.
ade Lynch (21), from Westport, Co Mayo, suffers from Ehlers-Danlos Syndrome (EDS), a disease that weakens the connective tissues of the body, including the skin, muscles, tendons and ligaments.
Once weighing in at just 29kgs, Jade’s heart has stopped six times and she has also been placed on a ventilator nine times.
Facing into palliative care, Jade is now desperately raising money through a GoFundMe page so she can have access to possible life-saving treatment in the UK.
“My stomach, intestine and small bowel are paralysed, which means every time I eat or drink something I vomit. It is like my stomach is an elastic band and anything that touches it bounces back up again,” she said.
The condition, which can also weaken blood vessels and organs and loosen joints, means Jade is now fed through a tube and has to take 42 tablets every day.
“In April my doctors told me that they were expecting me to die and that there was nothing they could do for me other than make me comfortable. I couldn’t believe those words had come out of their mouths.
“Dying scares me and I know that every time I get rushed to hospital could be my last. As my family say I’m fading away and I’m afraid to sleep in case I never wake up.
“My younger brother who is 13 has been diagnosed with EDS but they have managed to catch it early so he is doing well.”
Spending the majority of her teenage years in hospital, Jade was placed into an eating disorder unit as doctors struggled to understand the rare condition which affects at least 1 in 5,000 people worldwide.
“I was 15 and on a plane on a transition year trip and I passed out. We thought it was a panic attack but when I came home I was continuing to collapse.
“The nurses and doctors said I was attention seeking and that it was all in my head. I was bed bound for six months after that, I couldn’t move.
“On the first day of fifth year I went back to school and I was airlifted from school with a suspected stroke.
“I was sitting in maths and my friends thought I was asleep but when I stood up I hit the floor.”
Placed on stronger medication and no closer to a diagnosis, Jade became a weekly visitor to A&E.
“One doctor said to me, ‘you should become a doctor and see how annoying it is to see the same patient over and over again when there is nothing wrong with them’.
“Two weeks later I ended up in ICU for two months. On the first night I had to be resuscitated, I nearly died.”
Diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) – affecting blood flow and usually causing light-headedness, fainting and a rapid increase in heartbeat – in 2016, it wasn’t until 2018 that Jade had her breakthrough diagnosis.
“When I was told I had EDS I was in tears. I was so emotional because at some points I thought maybe I am crazy and it was all in my mind.
“Doctors were putting me into eating disorder units but if I had an eating disorder, I wouldn’t be coming in every two weeks trying to get nutrition and getting feeding tubes placed. I wouldn’t be searching for weight gain. I was dying, I was starving to death.
“At one point I was put into an eating disorder unit and I was starved for three days just to see how I would react. It was torture.”
Speaking of her frustration Jade revealed: “It’s changed my entire life. I can no longer eat or drink to gain nutrition because my entire gastrointestinal tract is paralysed. I’ve basically been living in the hospital since the age of 14. Now it’s killing me and I’m starving to death even with my feeding tubes.
“At one point I only had a BMI of 13 and I weighed 29kgs.”
With treatment options now running out, Jade who has dreams of becoming a nurse, relies on total parenteral nutrition (TPN), a method of feeding that bypasses the gastrointestinal tract. But this is only a temporary solution.
“I go in every now and again for TPN treatment every few weeks. It delivers vitamins. It’s basically a tube that goes directly into the bloodstream and is fed directly into a little pouch above the heart.
“I gained 10kgs on it from April to June alone, but it can cause your organs to fail so it isn’t a long-term plan.
“I can’t be a transplant recipient because my condition will just reject the new organ so I need to find something else that will work.”
Jade has started a trial in the UK and may also be fitted with a gastric pacemaker.
“The surgery for the gastric pacemaker is €25,000; we don’t even know if that will work but I am willing to try anything. Without this money and the support of so many generous people I wouldn’t stand a chance. I just want to have some kind of normality in my life and to be able to plan for a future. I won’t give up.”