After months of loss of appetite and chronic pain, a 29-year-old woman was diagnosed with a rare disease that not even her medical team had heard of.
Ruby Munsie suffers from a disease that affects less than 0.3 percent of the world’s population.
Superior mesenteric artery syndrome (SMAS) occurs when the small intestine becomes compressed between two arteries causing a partial blockage, making eating incredibly painful.
The Sydney woman visited her GP for the first time in October last year after friends expressed concern about her recent weight loss.
Ms Munsie had been experiencing nausea, poor appetite and discomfort on the right side of her abdomen after eating that gradually worsened into severe, constant pain.
Ms Munsie had been experiencing nausea, poor appetite and discomfort on the right side of her abdomen after eating that gradually worsened into severe, constant pain.
He also lost his voice several times that year, a symptom he ignored but later discovered is common among SMAS patients.
However, after some routine tests came back with no conclusive explanation for her symptoms, she was left to suffer in silence.
He clearly remembers the day he was finally admitted to the emergency department at St Vincent’s in Darlinghurst for two reasons.
she had just been promoted to the senior lawyer at the legal software company where she worked and, at the same time, she was experiencing one of the most immense pains of her life.
“I no longer felt like I could stay home because of the level of pain I was in and my inability to eat enough to survive,” she said.
At first he put off visiting the doctor because of his hectic work schedule and fear that it was all in his head.
This was not the first time I had felt pain when eating.
In January 2020, he lost a significant amount of weight very quickly and was vomiting every time he ate.
He also lost his voice several times that year, a symptom he ignored but later discovered is common among SMAS patients.
She had just been promoted to senior counsel at the legal software company where she worked, and at the same time, she was experiencing one of the most immense pains of her life.
Doctors initially told him he was psychosomatic before he was diagnosed with another rare vascular compression syndrome called medial arcuate ligament syndrome (MALS).
Doctors initially told him it was psychosomatic before he was diagnosed with another rare vascular compression syndrome called medial arcuate ligament syndrome (MALS).
He underwent surgery in April 2021 and within months was feeling fit and healthy again.
“I’m still very grateful for the time I was able to have after surgery, because I feel like I appreciated it in a way that most people can’t,” she said.
“You don’t realize how much the disease can take away from you, but it’s been pretty devastating to have it happen again,” he said.
He now uses a feeding tube to eat, but has been in and out of the hospital for months due to complications with the device.
Her loved ones have been desperately searching across Australia for a doctor or team who can help treat her.
“It’s been really difficult to find doctors who are willing and able to help,” she said.
“I was initially told there were no Australian doctors who could help me and that I should look overseas, but this is not realistic for me at the moment.”
His battle became even tougher when he unexpectedly lost his job in February.
The loss was devastating as his job provided a much-needed distraction from the pain and was the only thing that eased the burden of his expensive medical treatment.
He now uses a feeding tube to eat, but has been in and out of the hospital for months due to complications with the device.
Right now, she is spending thousands of dollars a month to cover life-saving care while she waits for an NDIS determination.
Her best friend Nikeesha Justice started a GoFundMe with the goal of raising at least $25,000 to help cover their out-of-pocket medical costs, legal expenses and services to improve their quality of life such as cleaning and physical therapy.
“As people who know her know, Ruby is the last person who wants to ask for help, but her current situation means she can no longer deny that she is needed,” Justice said.
“Please help make some of this fight easier for Ruby so she can focus on her recovery.”
The GoFundMe can be found here.