32-year-old Lisa Brown suffers from rare condition that is causing her to starve to death.
LISA: “There is no cure, so to speak, for SMAS. There is only corrective surgeries that make it easier to live a normal healthy life.”
One of only four hundred recorded cases, the former model was diagnosed with Superior Mesenteric Artery Syndrome or SMAS. A gastrovascular disorder, which makes eating solid food almost impossible.
PAT: “As parent you never want your kids to hurt but there’s nothing that will make it better for her..”
And as well as enduring excruciating pain she also has to content with the judgement of strangers.
LISA: “It would never cease to amaze me what people would come up to me and say. You don’t look nice, you’re too thin and how much do you weigh?”
PATRICK: “I’m terrified that Lisa’s condition can get worse.”
When Lisa married Patrick in 2010, she was living a normal life.
LISA: “Moving up in our careers and moving ahead with schooling and fairly healthy with no real issues at the time.”
PATRICK: “She was fun. We liked to go out and do things. Outgoing person, we laughed a lot.”
LISA: “And it was a slow progression. I didn’t notice weight loss per se. Suddenly I wasn’t able to eat as much as I used to.”
At first Lisa’s doctor thought it was acid reflux. But in 2012 her weight loss became worrying.
LISA: “I stepped on the scale and, I’ll never forget it, I was 112lbs. I almost fell over, because never in my adult life have I ever weighed 112lbs and that’s when we really started to become concerned.”
PAT: “Her personality has always been very bubbly.”
JOHN: “That’s changed since her illness.”
After going for tests in three different hospitals. Lisa was officially diagnosed with SMAS in 2013, and the debilitating disorder causes here to experience chronic pain every single day.
LISA: “It never goes away. In the abdomen area. It feels like there are two metal fists grabbing as tightly as possible and just twisting your intestines. It’s just this deep, deep pressure.”
PATRICK: “This disease has pretty much changed everything. Y’know, everything we used to do, everything about us completely changed. We don’t go out with friends, we don’t do anything we used to.”
Lisa is unable to consume liquids through a feeding tube which she attaches through her chest every day.
LISA: My day starts at about quarter to six in the morning. I wake up, my sixteen hour feed ends at 6am. The morning really is the best time of day for me where I have the least amount of pain, I’m able to eat a very, very tiny bit by mouth at the moment.”
PAT: “She always calls it her four hours of freedom, so I take her to coffee, if she has an errand to run, I’ll drive Lisa on her errands.”
ANNA: “I’ve known Lisa about 22 years, we met in fourth grade and I was heartbroken to see that she was going through something so horrible and sometimes it got pretty scary that I wasn’t sure that we were going to meet up again.”
Lisa is constantly reminded of how different her life is now.
LISA: “It never ceases to amaze me, what people would come up to me and say. Like, in the grocery store line, that doesn’t look nice, you’re too thin, and I would just say excuse me? That’s on the low end of offensive. I just want people to educate themselves and understand and not judge.”
However, there is hope that her condition would become more manageable.
LISA: “It is like a puzzle. Once you find the right doctor they have to take each piece and address it individually in order for the patient to get as close to being cured as possible. And for me that last step we’re hoping will be the surgery I’m having on September second, which is called pyloraplasty.”
Above all Lisa hopes to create greater awareness of SMAS.
LISA: “One out of three people die. And I want to educate not just the general public but the medical practitioners just as much.”
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