A WOMAN who has a terminal condition with multiple complications, including constant, excruciating pain, is raising money for treatment to make her more comfortable in the final months of her life.
Jen Marshall, 38, has severe Ehlers-Danlos syndrome (EDS), a rare genetic disorder affecting the connective tissues that support skin, joints, organs and other parts of the body. She suffers regular severe seizures and attacks of breathlessness, both lasting several hours, which she describes as terrifying.
Jen’s life-long condition was manageable until five years ago when she was involved in a fairground ride accident, followed by a car accident. They caused her chronic spinal problems and meant she has to wear a neck brace all the time. As a result of nerve damage, she developed severe swallowing difficulties and then progressive, agonising paralysis of the gut, known as gastroparesis, affecting her ability to eat.
Jen went to school near Guildford and spent much of her childhood in Woking where many of her friends lived. When she was younger, she enjoyed running, horse riding, working on her allotment and was studying education at university.
Jen said: “The accidents set off the stack of cards collapsing.
“I’m now bedbound, surviving solely on fluids and becoming increasingly malnourished. To make things worse, I am also allergic to most medications, many foods, intravenous solutions and nutrition and even tap water.
“There are very few treatment centres in the UK for EDS and I’ve been refused all of them as my complex needs can’t be met. There’s no NHS treatment available to me and I’ve no choice but to seek private care.”
The NHS has provided funding for round-the-clock care but a national shortage of carers means her mum is doing most of it.
“What’s worse, due to lack of knowledge and resources, the NHS can’t make me comfortable,” Jen said.
“My seizures are becoming longer and more violent. My pain is so bad that it requires multiple pain-relief interventions to even begin to control it.”
Jen receives private healthcare and complementary pain relief therapies to enable her to function. This costs £1,500 a month, which she can no longer afford, so has opened a JustGiving page to raise £15,000.
She is also holding an online auction with more than 40 prizes donated by local companies. It runs until 6 April.
“I’m trying to raise enough funds so I can afford to live comfortably for as long as time allows and won’t suffer needlessly,” Jen said.
To donate or enter the auction, visit: https://www.justgiving.com/crowdfunding/jen-marshall-5