Jen Stacy's story is one of resilience, adventure, and ultimately, recovery. It's a tale that weaves together a love for the open water, the challenges of chronic illness, and the unexpected triumph of modern medicine.
A Love Affair with the Sea
Jen's connection to the water runs deep. Growing up on Lake Erie in Ohio, she and her family spent countless hours boating. When the harsh winters became too much, they sought refuge in Southwest Florida, a boater's paradise of islands, harbors, and beaches. Now, with their boats moored behind their homes in Cape Coral, their adventures are limited only by time and money.
Last fall, Jen's daughter, Kamryn, embarked on her first cruise at just two-and-a-half days old, marking the beginning of a new generation of sailors. These boating trips are more than just recreation; they are a source of profound joy and connection for the entire family.
Captiva Island Escapades
Captiva Island, a short boat ride from their home, is a favorite destination. It's a place where the stresses of daily life melt away, replaced by the tranquility of the ocean and the beauty of nature. As WINK-TV’s noon anchor and morning reporter, Jen cherishes these escapes from her demanding work schedule.
One weekend, Jen, her husband Scott, and their family set off on the Ecstacy, their 43-foot Hatteras Sport Fisherman, a vessel filled with cherished memories. As they navigated the Caloosahatchee River, they passed "Cocktail Cove," a popular anchorage where boaters gather to socialize. They continued on to Picnic Island, where they grilled hamburgers and shared stories with fellow boaters, including a couple who had traded their corporate lives for a life of adventure on the water.
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A Paddle of Perseverance
As they approached Captiva Island, disaster struck. The engine of their dinghy, a 13-foot Whaler, refused to start. Undeterred, Jen decided to row the heavy boat to the marina. Despite her limited upper-body strength, she persevered, eventually reaching the dock, exhausted but triumphant.
At ’Tween Waters Inn, Harry, the marina manager, welcomed them with open arms. The marina, with its worn wooden docks and charming atmosphere, felt like a home away from home. After settling in, they enjoyed a swim in the pool and chatted with other guests, sharing laughter and stories.
Manatee Encounters and Sunset Serenity
Later, they explored the waters around Captiva, encountering a bald eagle and a flock of roseate spoonbills. Back at the Ecstacy, they were greeted by three gentle manatees, their presence a reminder of the beauty and fragility of marine life.
As the day drew to a close, Jen, Scott, and Kamryn walked to the beach to witness the sunset. The sky ablaze with color, they savored the perfect end to a perfect day. These moments, Jen reflects, are what life is all about: family, adventure, and the simple pleasures of being on the water.
The Onset of a Debilitating Illness
In 2006, at the age of 28, Jen's life took an unexpected and devastating turn. While traveling in Guatemala, she contracted a severe flu-like infection that triggered myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). This complex, multi-system illness left her bedridden and struggling with a myriad of debilitating symptoms.
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She experienced treatment-resistant infections, frequent drops in blood pressure, paralyzing weakness, vertigo, dizziness, and severe head and neck pain. Her nausea became so severe that it caused her esophagus to tear and bleed. She often lacked the strength to sit upright or stand, and was often too weak to eat, speak, or move.
A Life Interrupted
ME brought Jen's life as she knew it to a screeching halt. She could no longer work, socialize, or enjoy her hobbies. Confined to her bed, she endured relentless symptoms that ravaged her body.
The most incapacitating symptoms included POTS/dysautonomia, profound weakness, paralyzing exhaustion, and debilitating post-exertional malaise. This weakness transcended mere physical fatigue; it felt like a cellular-level frailty, as if her body was shutting down.
A Relentless Search for Answers
For years, Jen sought help from countless medical specialists and tried a vast array of treatments, including pharmaceuticals, homeopathy, naturopathy, and more. She underwent hundreds of tests, but nothing brought lasting relief.
Adding to the tragedy, Jen's family had a history of similar illnesses. Her father suffered from the same debilitating condition, ultimately dying at age 54. Her brother also endured years of illness before passing away at age 45 from immune failure caused by ME.
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A Glimmer of Hope: Hyperbaric Oxygen Therapy
In 2020, Jen participated in a research initiative testing hyperbaric oxygen therapy as a treatment for ME. During this trial, an extensive immunology workup revealed alarmingly high levels of cytokines in her interleukin pathways, indicating a cytokine storm that had been raging for 18 years.
Despite trying numerous biologics, antivirals, and other treatments, nothing seemed to touch the elevated cytokine levels. Jen felt trapped in a never-ending cycle of inflammation and suffering.
A Breakthrough with Rinvoq
In December 2023, Jen began taking Rinvoq, a JAK1 inhibitor, at a dosage of 15mg daily. Initially, she felt even worse than before. After two months of complete misery, a blood test showed that her white blood cell count had dropped to dangerously low levels, forcing her to discontinue the medication.
However, to her surprise, a follow-up cytokine panel showed that most of her elevated cytokines had returned to normal levels for the first time in four years. A few weeks after stopping Rinvoq, Jen experienced an undeniable shift. The crushing weight of ME was lifted.
A Miracle Recovery
The switch that had been flipped in January 2006, sending her body into a state of chronic illness, was flipped back in March 2024. Jen was alive again.
For the first time in over 18 years, her symptoms were gone, and eight months later, they have not returned. Recent panels show that her cytokine levels have continued to normalize, suggesting long-term benefits from the treatment.
A Life Restored
Jen can now hike without post-exertional malaise, walk, travel by plane, cook, clean, stand for long periods of time, shower often, take her kids to the grocery store, socialize, garden, and play the piano. Her 14-year-old remarked, "You're almost like a normal person now."
Friends, family, and physicians have all noticed the remarkable change in her. They say they feel like they are meeting a different person. Jen looks different, sounds different, and has her life force back.
Sharing Her Story
Jen plans to publish a case study detailing her journey, including pre-remission and post-remission lab values, symptoms, and treatments. She hopes that her story will encourage further research on JAK1 inhibitors for the treatment of post-infectious illnesses like ME and Long COVID.
She emphasizes that while she still has a connective tissue disorder, her ME is gone. Rinvoq made her body work the way it did before she got sick.