New Zealander Ruby Hill, 22, lives with a condition known as gastroparesis – it’s a digestive disorder which affects the normal movements of the muscles in her stomach, preventing it from emptying properly.
She said she was living life to the fullest until one day when she was eating her lunch and simply couldn’t stomach it.
The pilot-in-training was admitted to hospital in 2015 with suspected early-onset appendicitis and had surgery to remove her appendix and a ruptured cyst on her ovary.
However, she said after surgery, she continued to be in excruciating pain and because her condition is so rare, it took nine months of ongoing medical appointments before doctors were able to diagnose her.
Ms Hill revealed symptoms of her condition leave her constantly battling nausea and vomiting and that ‘food makes me sick’.
Over the course of three years, since her first hospital admission, her weight, once a healthy 72 kilograms dropped to 50 kilograms, before a further decline to 42 kilograms.
‘Most days I spend with a vomiting bucket or hugging a toilet. One minute you have no appetite then suddenly you get cravings like a pregnant woman but you can’t eat’ she told the publication.
Ms Hill’s situation is even more heartbreaking as she revealed there is no cure for her illness.
‘My heart dropped at the word incurable. You think, ‘what does that mean for my life?’ And they just don’t have any answers to give you. It’s destroying.’
Currently, the 22-year-old relies on a feeding tube called TPN (total parental nutrition) to keep her alive.
And while this ensures she receives the nutrients she needs to maintain some degree of health, this isn’t a long-term solution.
She explained the tube, which sits inside the main artery which runs close to her heart could become infected and there was also the potential risk of liver failure.
While some gastroparesis sufferers can be fitted with a gastric pacemaker – a device similar to a heart pacemaker that sends electrical signals to the stomach to tell it to contract and process food – Ms Hill said this wasn’t an option for her right now.
However, she revealed specialists are in the process of developing a new pacemaker – although this was still some time away.
For now, though, Ms Hill hopes by sharing her story she is able to shed a little more light on the rare condition.
‘After being diagnosed with gastroparesis I still get labelled as neurotic. So many doctors have never heard of the disease and I have to teach them before they can help treat me.’
In Australia, there are an estimated are an estimated 125,000 sufferers of gastroparesis.
The condition can have a significant impact on quality of life including the physical, emotional, and financial aspects of life.