"It got really bad to the point I couldn't even keep down water and even my own saliva."
Richmond teen Hannah Schneider was only 16 years old when she was faced with continuous nausea, vomiting and stomach pain that sent her to BC Children's Hospital in July 2023.
Initial tests could not give her an answer for her abdominal pain and nausea and she was hospitalized with an NG tube inserted, a tube that goes into your stomach through your nose.
"I got discharged from the hospital and (doctors) still didn't really know what was wrong. They kind of chalked it up to like a 'function' brain and gut connection and I just wasn't completely sold on that because it was too severe," said Hannah.
She added that BC Children's Hospital did extensive testing and worked for several months to find answers.
"There had to have been something more."
Hannah was told by doctors and psychiatrists for several months that she was possibly seeing "functional somatic symptoms" with "a bit of somatization," meaning her physical symptoms are not fully explained by a physical disease.
She was then suggested to "try mindfulness."
"I wasn't opposed to them originally, but then once I tried them, I very quickly came to the realization that it was something not in my control."
In September, another hospital admittance had Hannah receiving an NJ tube, which "bypasses the stomach and is inserted into her intestines for better nutrient absorption."
Hannah was then diagnosed with gastroparesis, also known as paralyzed stomach, which is when the organ does not contract and food sits for hours.
"Gastroparesis is normally secondary to something, so we had one piece of the puzzle."
January 2024 was when she was officially diagnosed with Median Arcuate Ligament Syndrome (MALS), a rare condition when the band of tissue in the upper belly area (median arcuate ligament) compresses the celiac artery that sends blood to the stomach, spleen and liver.
Hannah was told she was one of the first MALS patients diagnosed at BC Children's Hospital.
The Grade 12 Hugh Boyd student had also been diagnosed with several other chronic illnesses including Ehlers–Danlos Syndrome, postural orthostatic tachycardia syndrome and mast cell activation syndrome.
Receiving a proper diagnosis "that finally made sense" allowed Hannah to see a direction of hope.
"My first reaction was 'I'm not crazy.'"
Jennifer Schneider, Hannah's mom, told the Richmond News her daughter spent two Christmases at BC Children's Hospital, and a total of six months in-patient during the last 18 months.
"It's pretty horrendous because it's affected our lives in a huge way. (Hannah) missed half of Grade 11 and she's missed quite a bit in the first term of her Grade 12 year," said Jennifer.
She added their team of doctors has been "so committed" to their case to get them to "a place of stability" in order to allow Hannah to be a teenager and focus on graduating, prom and everything Grade 12 students do.
"We just want her to enjoy some normal teenage activities, even though she can't eat or drink -- just to live a little bit of a normal life outside of the hospital."
Medical help outside of Canada
Finding doctors who could diagnose and treat neurogenic MALS has been a maze for the Schneider family.
BC Children's Hospital brought in an interventional radiologist from Vancouver General Hospital to perform a celiac plexus block test for Hannah to be officially diagnosed, according to Jennifer.
Even then, they've been told there is no doctor in Canada, let alone in B.C., that specializes in the rare condition.
Then they were introduced to Dr. Richard Hsu who is an expert in MALS-specific surgeries at Stamford Hospital in Connecticut.
Hannah has yet to decide whether or not to pursue the surgery, which she expects will require a year-long recovery and doesn't guarantee results.
The surgery alone is estimated to cost around $55,000 USD.
"This doesn't include, say, if I have a complication and I need to go back to the hospital," said Hannah, adding there are travelling, accommodation and other living expenses as well.
At the same time, Jennifer said there is uncertainty about the tariffs in the U.S. and the possibility of private surgery costs going up.
"Medical tourism is what it's called. There is no insurance company that will cover us for going to the States for life-changing surgery," she explained.
"We will do everything we can. We might start a (crowdfunding campaign) but we're just not there yet and we don't want to do it if we don't need to."
Future career plans
Despite having been in and out of the hospital for almost three years, the Hugh Boyd student doesn't plan on finding a career in the medical field.
"I've been on one side of the system and I don't want to be in a hospital if I don't have to," said Hannah.
Instead, she intends to study hairdressing at Vancouver Community College and eventually start a small business to focus on doing hair for kids with autism and severe sensory issues.
"Because I have sensory issues, I can see how getting your hair done could be super stressful. I want to find ways to make the experience more enjoyable," said Hannah.
In the meantime, she's looking forward to graduation without the need to be in the hospital and taking a gap year before attending post-secondary.
"After 13 years of school, I need a little break. I'm going to visit my friend in New York this summer."
Ever since she was diagnosed with MALS, Hannah has been sharing her journey and raising awareness of the medical condition on TikTok.
"For anyone who is trying to navigate the medical system for whatever their condition may be, don't stop advocating. Do not sit there and accept things you do not agree with, allow yourself to get angry and allow yourself to speak up for your rights as a patient," said Hannah.
As a patient who has been looking for answers for a year and a half, the Steveston resident is encouraging patients that it is okay to find different doctors for second opinions if "something doesn't seem right."
"The Canadian health care system is kind of a mess, but it is possible with the right referrals. Be patient because doctors are also trying."
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