Woman with Rare Digestive Disorders Seeks Surgery in U.S.

Nicole Friesen, a 28-year-old woman from Manitoba, Canada, is navigating a complex medical journey as she seeks surgical intervention for a severe, rare digestive condition that has severely impacted her ability to eat. After years of gastrointestinal issues, Friesen has struggled with consuming food and has resorted to a feeding tube for essential nutrition.

Friesen’s symptoms began in childhood, escalating over time. She described her experience: “I started getting violently ill after eating meals. It got to a point where I couldn’t eat more than three bites of food, and I would feel very full and nauseous.” This led to significant weight loss, with Friesen weighing under 90 pounds before receiving a feeding tube, which provided some relief but did not resolve the underlying issues.

After consulting multiple specialists, initial tests revealed that Friesen suffers from Superior Mesenteric Artery Syndrome (SMAS), a condition where the superior mesenteric artery compresses the duodenum, impeding food passage. Friesen was later diagnosed with several other rare conditions: Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), and May Thurner Syndrome (MTS). Dr. Charles Bernstein, a professor of internal medicine at the University of Manitoba, noted the rarity of Friesen’s case, stating, “To have two or more of these conditions would be extremely rare, and to have all four would be very, very rare.”

Seeking Treatment Abroad

Friesen’s search for answers led her to Spain in June 2023, where she consulted a surgeon specializing in vascular compression syndromes. Following further tests, she received her definitive diagnoses. “It was a relief to figure out the cause of my issues but now I need to get them treated,” she said.

The surgical procedure recommended for Friesen, known as the Alvear method, is designed to relieve the compression in her small intestine. Unfortunately, this specific method is not available in Canada. As a result, she is scheduled to travel to Virginia in January 2024 for the surgery. The entire trip is expected to cost around $60,000, covering medical expenses, travel, and accommodation.

Friesen expressed hope regarding her upcoming surgery, stating, “It has been such a huge hope to people living with SMAS to be able to regain the ability to eat.” She advocates for the need for Canadian surgeons to learn this technique, emphasizing its potential to help others facing similar challenges.

The Struggles of Rare Conditions

Dr. Bernstein highlighted the frustrations often experienced by patients with rare conditions like Friesen’s. “It’s not uncommon to have to go to a center of excellence, often located in the U.S. or Europe,” he noted. He encourages patients to seek care from experts who specialize in their specific conditions, as it can significantly improve their chances of receiving effective treatment.

For Friesen, the journey ahead is daunting but filled with hope. “We’re very hopeful this surgery will allow me to regain the ability to eat,” she said, underlining her determination to reclaim a normal life despite the overwhelming hurdles.