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After years of doctors dismissing her seizures as mental health issues, she finally uncovered the genetic disorder they missed.
By
Adam Albright-Hanna
By
Upworthy Staff
For years, Phoebe Tesoriere was told her deteriorating physical health was in her head. Despite suffering from severe seizures, frequent falls, and a progressive loss of mobility, doctors repeatedly dismissed her symptoms as anxiety, depression, or epilepsy. At one point, after returning from the emergency room in Cardiff, Wales, she was even warned in writing that if she kept coming back, she would be treated strictly as a mental health patient.
Tesoriere’s health struggles began early in life, with walking difficulties initially attributed to being born without a left hip socket. While she underwent bone grafts to address the hip issue, her abnormal gait and balance problems persisted. By 2022, she was diagnosed with epilepsy after collapsing at work, but the treatments did little to stop her physical decline.
Things took a terrifying turn in January 2025 when she fell down the stairs, leaving her temporarily unable to walk. Months later, a severe seizure left her in a 48-hour coma. Yet, upon her discharge, medical professionals once again pointed to anxiety.
Determined not to be dismissed
Determined to find real answers, Tesoriere entered her full list of symptoms into ChatGPT. She detailed her locked ankles, lack of reflexes, loss of sensation from the chest down, double incontinence, and sudden hair loss.
The chatbot generated several possibilities, but one stood out: hereditary spastic paraplegia (HSP). HSP is a group of rare inherited disorders characterized by progressive weakness and stiffness in the leg muscles. Armed with this information, Tesoriere brought the findings to her general practitioner and requested a genetic test.
An unexpected breakthrough
The test confirmed that she has a complex quadriplegic form of HSP, which currently affects all four of her limbs. Specialists believe a severe MRSA infection she contracted as an infant likely mutated the gene, triggering the progressive condition later in life.
According to the original reporting by WalesOnline, she experienced years of incorrect diagnoses before turning to AI. Tesoriere also told the BBC that she turned to AI after finding the process “really lonely” and having to “fight to be listened to.”
While Tesoriere’s case is extreme, her reliance on technology to navigate the healthcare system reflects a rapidly growing trend. A 2026 Gallup poll found that 25% of people now use AI to gather healthcare advice or information, with young adults leading the charge. In fact, 69% of those aged 18 to 29 report using AI tools to research medical concerns.
Life after diagnosis
Now using a wheelchair and unable to continue her former teaching job, Tesoriere is focusing her energy on pursuing a master’s degree in psychology. Her sister has also launched a fundraiser to help purchase a specialized wheelchair to support her spine and preserve as much of her physical independence as possible.
Medical experts emphasize that while AI can be a useful starting point for patients who feel ignored, it should always be paired with professional validation. Dr. Rebeccah Tomlinson, a general practitioner in Cardiff, told the BBC that patients coming in with their own research can help guide difficult diagnostic conversations, especially as healthcare systems face mounting pressure. For Tesoriere, having the information to advocate for herself made all the difference.
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