VEXAS - In Honor of Max Gyllenskog Intro

VEXAS Syndrome: Spread the Word

When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled. It started with a blood clot in his leg, leading to the prescription of a blood thinner. Next came excruciating pain in the cartilage of his nose and ears—though only one of these issues would flare up at a time. Soon, he would lose sight in one eye, only to have it transfer to the other. Then came a full-body rash, dangerously low blood oxygen levels, and a persistent cough that seemed never-ending. Encouraging him to go to the ER was a challenge. Even in his mid-seventies and faced with health crises, he had never been one to complain.

His selflessness made him reluctant to occupy a doctor’s time when others needed attention too. Time after time, the hospital staff reassured him that all his tests returned normal results, insisting there was nothing wrong and sending him home with some medication to address his symptoms. Yet, every treatment would alleviate one issue while introducing another. This cyclic ordeal led him back to the ER repeatedly, often with the staff tacitly suggesting he was wasting their time.

His symptoms would fluctuate, easing or intensifying depending on his stress and depression levels at any given moment. On days when he was relaxed and free from stress, he felt significantly better. His mood would also brighten when his family visited, when his favorite sports teams won, or when positive news emerged in national politics. However, on more stressful days, such as when he was in the hospital and learned that his nephew Ryan had been harassing and spreading harmful lies about his family, the impact was devastating for him.

Despite his stoic nature, if he consented to go to the ER, it meant he was in considerable distress. Even with excellent health insurance, he typically avoided medical visits. Medications would clear up the rash, only for him to be diagnosed with pneumonia days later. Just as that improved, severe pain would strike one of his ears, keeping him from sleep. Blood clots continued to surface, along with yet another rash, extreme breathing difficulties, confusion, and a total loss of appetite. It felt like a relentless cycle. Have you ever been forced to cough while struggling for breath?

Through all of this, he was perpetually dizzy, overwhelmingly fatigued, constantly suffering from low blood oxygen levels, sitting up all night in a chair, coughing up phlegm, and enduring leg pain. He’d have a relatively good day followed by several days of misery. A fever ranging from 102 to 104 degrees would come and go. Hospital staff would sometimes put him on oxygen temporarily, only to declare it unnecessary for home use. And yet, he would end up needing it again. Finally, after ten long months, his 22nd doctor mentioned something he had read about in a medical journal called VEXAS Syndrome. It seemed he was the only doctor in Utah aware of it. When he showed him the list of symptoms, Max nearly fell off his chair—it described exactly what he’d been experiencing for nearly a year.

They initiated a treatment similar to chemotherapy, but it frequently had to be halted and restarted due to bouts of falsely diagnosed pneumonia and other complications. Tragically, he only survived five months longer. Up until his last ten days, Max remained sharp and engaged in meaningful conversations. Nobody could have predicted how close he was to the end. One day he collapsed from a mini-heart attack, losing around 75% of his mental clarity. He was taken back to the hospital, this time by ambulance. For a week, his family held onto the hope that he would regain his memory and return home after yet another battle with "pneumonia". A week later, he was life-flighted to a better facility in Salt Lake City, and within two days, the doctor told his family to prepare for goodbyes. Max was hours from passing away. It’s hard not to feel that if he had been diagnosed and treated a year earlier when his serious symptoms first emerged, his suffering could have been alleviated, and his life prolonged.

In his honor his family has committed themselves to spreading awareness about VEXAS Syndrome. Other than that one doctor, no other healthcare professionals in Utah had heard of it. If that one doctor hadn’t happened to browse through a medical journal, he wouldn’t have known about it either. Max embraced the idea of being a pioneer for new treatments. If one were to sum up his greatest quality in a single word, it would be "sacrifice." He was willing to endure immense pain if it meant sparing others from similar suffering in the future. His true passion in life was helping those around him.