Woman Fights for Her Life Against Rare Disorder Starving Her to Death

At age 28, Lisa Brown seemed to have everything—she was newly married, happy, and just getting settled into her new life. Then, she mysteriously began losing weight even though she was eating regularly, and then her weight plummeted to dangerous lows. Suddenly, she was fighting to stay alive and convince others that she didn’t have an eating disorder.

The Washington Post reports that Brown’s health started changing in 2011, and she noticed when her clothes—even her wedding ring—stopped fitting. Brown, who’s 5’10, weighed herself and found she’d gone from 140 pounds to 112. People began to believe that the former model was struggling with an eating disorder, although Brown had no idea why she was losing the weight or where the terrible abdominal pain she was constantly in was coming from. And then Brown stopped being able to eat altogether.

It wasn’t until 2013 that Brown began to get answers about what was going on, which wasn’t, as one doctor suggested, acid reflux:

Finally, Lisa went to nearby Froedtert Hospital & Medical College in December 2013. The gastroenterologist took one look at her prior CT scans and angiograms to give her a diagnosis. (There have only been 400 documented cases of SMAS to date.) “She could see the pinched area of my intestine very clearly in the scan and the actual doctors reports. There were also notations by other doctors’ about the pinch, suggesting further investigation for superior mesenteric artery syndrome, says Lisa. “But nobody ever told me, which is frustrating. Now, I tell people to be their own advocate and check your own medical records.”

Superior mesenteric artery syndrome, the disorder Brown was diagnosed with, occurs when a part of the small intestine is trapped between two arteries, making digestion impossible, Good Housekeeping reports. In addition, she also suffers from gastroparesis, a condition that doesn’t allow her to absorb vital nutrients because her stomach doesn’t empty itself normally. What this means is that Brown is slowly starving to death.

Surgery can help SMAS, but it was only a temporary fix for Brown. Soon, the pain and vomiting came back and she began losing weight again. Now, she has to spend 20 hours a day connected to a feeding pump, according to Good Housekeeping. She takes a brief four-hour break between feedings to go outside and run errands, but then has to go back to the tube, spending her day being fed and arguing with insurance companies over the telephone about her medical bills, which are both astronomical and have put distance between Brown and her husband, whose job has become the couple’s only source or income. According to Brown, however, the couple is working on their issues.

Brown underwent a surgery that will allow her a little more freedom last week: she had a rejejunostomy feeding tube put in. This will send nutrients directly to her small intestine via her abdomen. Brown, who now weighs only 90 pounds, is optimistic.

“It’s not a permanent fix, but this will hopefully get my stomach and my digestive tract working again — and finally keep me strong and stable.