Former model Lisa Brown suffers from an extremely rare condition that is causing her to starve to death.
The 32-year-old weighs just 89lb and can’t eat solid foods without suffering vomiting, severe pain or nausea.
In 2013 Lisa was diagnosed with Superior Mesenteric Artery Syndrome (SMAS), a gastrovascular disorder that causes a pinching of her intestines, making it hard to keep solid food down.
She is one of only 400 documented cases worldwide, which has a mortality rate of one in three.
Lisa’s diagnosis came after visiting three different hospitals and going through different CT scans.
The once bubbly human services worker and model is now a shadow of her former self and her skeletal appearance has attracted criticism from people who think she has an eating disorder.
Lisa saw her weight drop by 30 per cent from a healthy 140lb to just 89lb in little under two years.
‘I was vibrant, social, healthy and spirited and now I’m in constant pain, rely on others and I’m confined to my home most days,’ says Lisa.
‘I wasn’t noticing the weight loss at first, just that suddenly I wouldn’t be able to eat as much as I used to.
‘Then looking at the scale when I started dropping the pounds I almost fell over I was so shocked – that’s when I knew we need to find a solution – I was scared for my life.
‘The pain is chronic, it feels like there are two metal fists grabbing as tight as possible and twisting my intestines.
‘This disease has taken everything – time spent with family used to be fun but the more ill I became with SMAS, the more those things came to a halt and it transformed into a caretaker role.’
SMAS is a rare and potentially life-threatening disorder that affects less than a tenth of one per cent of the population and has a 30 per cent chance of death. The diagnosis often comes too late due to lack of proper medical resources and misdiagnosis.
Despite multiple surgeries to correct her digestive system, everything has proved unsuccessful and Lisa’s future remains in doubt.
Her husband Patrick Brown, 32, says: ‘The disease changed everything that we knew, everything we used to do, everything about us has completely changed.
‘I am terrified that her condition can get worse – I’m scared. I fix things for a living but I can’t fix this and I feel helpless – so what else can I do? I just have to be there for her, be her rock.’
Lisa depends on her mother for help when Patrick is travelling for work.
‘Naturally the level of worry and concern for me escalated when I was diagnosed and my parents are my biggest support and help,’ says Lisa.
Every day around 2pm, Lisa hooks up a J-tube stomach feeding tube to give her the proper nutrients she needs to survive.
‘I’m on a 16-hour-a-day feed. I wake up at 6am and it ends and I hook it back up in the afternoon,’ she explains. ‘Mornings are always the best time of day for me where I have the least amount of pain.’
Lisa is constantly reminded of how different her life is now as strangers have approached her thinking she has an eating disorder.
‘It never ceased to amaze me what people would come up to me and say. Once in the grocery store line a person behind me asked my weight and told me that I can’t starve myself because it doesn’t look good. High school students yell at me to eat a cheeseburger when they see me in public.’
Now Lisa is spending what little energy she has left to bring awareness to the crippling disease.
‘Never judge anybody because behind that smile might be a thousand tears and a story like you wouldn’t believe,’ she says.