Sussex woman with rare disease calls for better support after being forced to travel abroad for treatment
Jessie Sharp has raised almost £100,000 for treatment in America after she was diagnosed with gastroparesis almost three years ago.
An East Grinstead woman who's had to travel abroad to treat her rare stomach paralysis says more support's needed in the UK for sufferers of rare diseases.
29-year-old Jessie Sharp has raised almost £100,000 for treatment in America, after she was diagnosed with gastroparesis almost three years ago.
The condition, which means the stomach muscles don't contract to digest food as they should, affects 14 in every 100,000 people, according to charity Guts UK.
In her GoFundMe page, Jessie says just days in she's already "been through more treatments than I can have ever imagined" - after previously being told she could have an eating disorder.
She told Greatest Hits Radio:
"It's bittersweet, really, because you couldn't get the help in the UK.
"When you get over it, over to America, your eyes are open to what they can actually do out here.
"We shouldn't have to do it that way. It should all be funded on the NHS. I mean, that's what it's there for.
"Even when I was less severe, they couldn't help - they just don't have their expertise or the funding within them to help people in our condition."
"Hope is back in my life again"
The sixteen week 'neurological recovery programme' is hoped to help with Jessie's condition by stimualting the nervous system, she explained.
"It's been a long journey of ups and downs, all the emotions you can think of," she admitted.
"Then just when you get to rock bottom and you think there's no hope left, you finally find this clinic and the first thing they tell you is 'we can help you'.
"Hope is back in my life again."
Now, she's looking ahead to the future - and hopes to help others dealing with gastroparesis fundraise for similar treatment.
"There's so many other people in this situation, and I'm lucky that I've managed to fundraise so much and I know not everybody would be able to achieve that," Jessie explained.
"When I'm recovered, I want to build that trust up and help others in that same situation and give them that hope to get the treatment they desperately need as well."