Medical Fundraiser for Connor

My name is Nancy Scagnelli, Connor’s mom, and we, his family, are fundraising for his medical treatments and associated costs.

In 2021, Connor developed autoimmune autonomic neuropathy and myalgic encephalomyelitis (ME) after likely being exposed to COVID-19 during a rotation in the intensive care unit at the University of California, Irvine, where he was beginning his residency in their neurology program.

Today, Connor is fully incapacitated and disabled, and worsening at a drastic rate. We are urgently seeking his return to California from Vermont to restart plasmapheresis treatments with his doctors at the University of California, San Diego before his disease surpasses a threshold he cannot recover from. We’ve provided Connor’s story below.

Connor’s Story:

Connor Scagnelli graduated from Larner College of Medicine at The University of Vermont in 2021, where he received the American Academy of Neurology Medical Student Prize for Excellence in Neurology. Connor’s interest in neurology is not only to be part of scientific advancement, but also to be an advocate for medicine’s most complex patient cohort. Throughout his academic career, Connor never shied away from a challenge; he has always embraced the critical thinking and analysis required for diagnosing and treating the most difficult neurological cases.

After matching with his top choice neurology program at the University of California, Irvine (UCI), he started his residency program with his sights set on supporting some of the most neurologically vulnerable patients worldwide. By the second month of his UCI residency, Connor was recognized in a department-wide newsletter:

“A huge shoutout to Connor Scagnelli for being a champion and patient advocate for his critically ill patients. He exemplifies a compassionate and thorough resident going above and beyond to work up critically ill patients in the ICU. He meticulously combed through prior works ups, drawing out a timeline of fevers and worsening leukocytosis with corresponding antibiotic changes for his patient in an effort to understand why his patient was not improving when the rest of the team didn’t have a clear explanation. Your patients are very lucky to have you as their physician!”

In September 2021, his career came to a halt when he was likely exposed to COVID-19 during a rotation in the intensive care unit. He expected to recover and return to the hospital to complete his first year of residency, but he never did.

Connor developed autoimmune autonomic neuropathy, a type of autonomic nervous system dysfunction thought to be caused by an overactive immune system. Experts now know that a COVID-19 infection can directly trigger autoimmune and autoinflammatory diseases. This can be one presentation of Long-COVID. Connor’s autonomic nervous system can no longer maintain stable blood pressure or supply his brain with sufficient blood, resulting in a racing heart rate, lightheadedness, brain fog, and blood pooling in his extremities.

In addition, Connor was subsequently diagnosed with myalgic encephalomyelitis (ME), a chronic and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction. Connor can no longer exert himself physically, cognitively, or sensorially without experiencing debilitating headaches, brain fog, and exhaustion, all of which cannot be helped with rest or sleep.

In February 2022, Connor relocated to San Diego, where he began an experimental treatment, plasmapheresis, at the University of California, San Diego (UCSD) to manage his autoimmune autonomic neuropathy.

After months of plasmapheresis treatments in San Diego, which produced noticeable improvement, he relocated back to Vermont with his family to pursue other treatments with their support and care. Unfortunately, Connor’s condition has only worsened since July 2022. Once an active physician, running, surfing, and studying in his free time, Connor, at age 30, is fully incapacitated and disabled, no longer able to tolerate standing, talking, or walking. He spends upwards of 23 ½ hours a day lying horizontally in immense pain and requires full-time care from his family and supplemental oxygen. In the last year, he has only left the house three times, all to receive blood work. To date, plasmapheresis has been the only treatment that has had any impact on Connor’s functioning. The cover photo of this fundraising page shows Connor and his partner, Nicole, while they were living in California.

Long-COVID has no one treatment, and the plasmapheresis clinic at UCSD is unique – it is one of the only clinics that offer plasmapheresis outpatient and without a port, which is the only form of therapy Connor can tolerate in his current state. Despite leveraging his deep knowledge of neurology and employing an exhaustive range of exploratory treatments, Connor’s condition is rapidly worsening. We, his family, are urgently seeking his return to California from Vermont to restart plasmapheresis treatments with his doctors at UCSD before his disease surpasses a threshold he cannot recover from.

Support:

Relocating to San Diego and re-starting treatment poses many financial and logistical challenges. Traveling by commercial flight is not a viable option for us. Connor is unable to stand or sit up for more than five minutes, and in this fragile state, he cannot risk exposure to additional viruses, such as COVID-19: the Center for Disease looked at wastewater samples and reported that 81% of flights have active COVID infection on-board. He will most likely require medically assisted transportation. In addition to transportation costs, as an immunocompromised and disabled person, he will also require safe and accessible housing near the hospital.

As his family, we are obligated to explore all avenues to improve Connor’s quality of life. This is a dire circumstance, and we are raising funds to go towards getting Connor the treatments he needs as soon as possible.

Thank you for reading Connor’s story. Be safe!

Additional Information on ME:

Connor is at the very severe stage of ME:

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis

Fatigue Can Shatter a Person