By Samantha Grillo @_samanthagrillo

FORMER model Lisa Brown suffers from an extremely rare condition that is causing her to starve to death

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Videographer / Director: Brad Podowski
Producer: Samantha Grillo, Nick Johnson
Editor: Sonia Estal

Biggest supporters: Lisa Brown poses with her stepfather, John Neuhauser and mother Pat Neuhauser

The 32-year-old, from Wisconsin, USA, weighs just 89lbs and cannot 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.

A shadow of her former self: Lisa holds up a picture of herself in her modeling days
A healthier Lisa poses next to a car years before her illness started

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 140lbs to just 89lbs in little under two years.

She said: “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.

“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.

Old friends: Lisa visits with elementary school friend Anna Murfield in a coffee shop in Wisconsin, USA

“This disease has taken everything - time spent with family used to be recreational and fun - 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 a thirty 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.

Lisa’s husband Patrick Brown, 32, said: “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.

Lisa no longer fits in her old clothes as she continues to lose weight
At just 89lbs, Lisa does not fit in her old clothes

“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 her Patrick is traveling for work.

She said: “My mother is here every day to do things that I used to be able to do but now can’t.

“She tends my garden, helps change the bed sheets and takes me for my errands.

Lisa is visited by nurse Renee Proulx monthly at her home in Wisconsin, USA
The former model once lived an active lifestyle but is now mostly confined to home

“Naturally the level of worry and concern for me escalated when I was diagnosed and my parents are my biggest support and help.”

Every day around 2pm, Lisa hooks up a J-tube stomach feeding tube to give her the proper nutrients she needs to survive.

She said: “I am on a 16 hour a day feed. I wake up at 6am and it ends and I hook it back up in the afternoon.

“Mornings are always the best time of day for me where I have the least amount of pain.”

Healthier days: A smiling Lisa prior to her SMAS diagnosis
Lisa posing on her college graduation day in 2003

Lisa is constantly reminded of how different her life is now as strangers have approached her thinking she has an eating disorder.

She said: “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.

Lisa with her home nurse Renee Proulx

She said: “One out of three people with SMAS die and I want to educate not only the general public but medical practitioners as well.

“Be your own advocate - I can’t stress it enough, everybody has a story no matter who you are.

“Never judge anybody because behind that smile might be a thousand tears and a story like you wouldn’t believe.”

Donations for Lisa’s medial expenses can be made at