34-year-old Lisa Brown died at her Brookfield home in Wisconsin last week after battling a rare digestive disorder that caused her weight to plummet despite consistent eating, weighing only a mere 35kg at the time of her death.

For six years, she struggled with her disease and searched desperately for a cure, while dispelling people’s speculations about her having eating disorders.

“I’m not giving up,” Brown said. “I’ve just been fighting for so long. My body can’t take it.”

Drastic weight loss finally explained

Before she fell ill, Brown was a substance counsellor with an active lifestyle, who had gone to college and graduate school, and had married the love of her life.

“Everything was perfect,” she recounted. “I couldn’t have been happier.”

But at the age 28, things quickly took a turn – she started to lose weight, and would not stop. Her clothes became too loose and her wedding ring would not fit. She was vomiting after every meal and suffered from severe abdominal pain –as though 'there are two metal fists grabbing as tight as possible and twisting my intestines' – despite antacids prescribed by her doctor.

In 2013, after visits to three different hospitals and a series of CT scans, Brown was diagnosed with superior mesenteric artery syndrome (SMAS), a rare digestive disorder where two arteries constrict a part of her duodenum, preventing food from passing through.

The compression led to a partial or complete blockage of the intestines, and she was slowly starved of nutrients.

The diagnosis for SMAS is often delayed due to indeterminate symptoms or inadequate medical resources, and Brown is one of the 400 documented cases of SMAS in the world, which has a one in three mortality rate.

More than physical: SMAS affects mental wellbeing

“The disease changed everything that we knew, everything we used to do, everything about us has completely changed,” said her husband, Patrick Brown.

Within the first two years, the nearly 180cm tall former model had lost nearly 20% of her body weight, weighing from 63kg to 50kg, and attracted unwelcomed stares and unkind words from strangers.

“People would say I should eat a burger and they’d ask me why I was starving myself,” Brown said. “It was very hard to hear but I knew the truth.”

She underwent a corrective surgery to help with her digestion, but the operation failed to improve her condition. She received nutrients from a feeding device that was hooked up 20 hours a day, and was eventually diagnosed with gastroparesis.

In 2015, doctors at the Cleveland Clinic where she was receiving treatment informed Brown that she would need an intestinal transplant, a procedure that cost over $1,000,000 of which insurance would not cover.

“It was my last chance at surviving,” she said, “But it didn’t happen.”

In May 2016, Brown and her husband flew to Jackson Memorial Hospital, which also offers the transplant, but was told to gain 9kg in order to have surgery – a task that was impossible.

Unable to receive treatment, palliative care became only choice

Last October, Brown opted to receive hospice and palliative care. Her treating physician, Dr Paul Bullis, said that she was not a suitable candidate for further treatments because of numerous reasons.

“It’s not a scary thing. It doesn’t mean you’re ready for death; it means you’re finding another way to help your fight,” Brown said. “It doesn’t mean you’re giving up. I’ve never given up.”

According to Patrick, Brown planned her own funeral before her passing, and asked for attendees to wear bright colours and share fun stories about her.

“The last thing I said to her was, ‘Go be free,’ ” he said.

“I wish I could see her every day but she’s now at peace.” MIMS

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