A former model who never worried about her weight now constantly weighs herself on the scale to ensure she remains healthy. Lisa Brown, 32, from Wisconsin, has dropped from a 140 to 89 pounds off her 5-foot-10-inch frame after being diagnosed with Superior mesenteric artery syndrome (SMAS), a stomach disorder. The rare disease is wearing her thin as she’s plagued by vomiting, chronic pain, and nausea, unable to keep any solid food down.

“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,” Brown told Barcroft TV. “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.”

In 2013, after visiting three different hospitals and going through several CT scans, Brown was first diagnosed with SMAS. This stomach disorder causes pinching in the intestines, making it hard to keep solid food down. The superior mesenteric artery provides blood to the small intestine, cecum, and colon, crossing over the first part of the small intestine — the duodenum, according to the International Foundation for Functional Gastrointestinal Disorders (IFFGD). Symptoms start to occur when the artery obstructs the duodenum.

Since SMAS is rare and potentially life-threatening, the diagnosis often comes too late, since there is a lack of medical resources and misdiagnosis. It affects less than a tenth of one percent of the population with a 30 percent chance of death. Brown has had multiple surgeries to help her digestive system, but everything has proven to be unsuccessful.

However, the former model continues to receive the support of her friends and family, including her husband Patrick Brown, 32. “The disease changed everything that we knew, everything we used to do. Everything about us has completely changed,” he told Barcroft TV. “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 helplese, so what else can I do? I just have to be there for her — be her rock.”

Currently, Brown is on a 16-hour-a-day feed, waking up at 6 a.m. and hooking it back up in the afternoon. Every day around 2 p.m. she hooks up a stomach feeding tube in order to receive the proper nutrients she needs to survive. She admits she feels as if two metal fists were grabbing as tight as possible and twisting her intestines. “Mornings are always the best time of day for me, where I have the least amount of pain,” she said about her daily routine.

Brown’s skeletal appearance garners the attention of strangers who confuse her rare disease for an eating disorder. She is spending her energy to raise awareness of the crippling disease. “High school students yell at me to eat a cheeseburger when they see me in public,” Brown said.

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

Currently, Brown is one of just 400 documented people in the world with the illness.

To donate for Brown’s medical treatments, go to her GoFundMe page.