The mother of a seriously unwell teenager said she is “fighting a losing battle” to get answers from medics. Keira Passey had been a happy 16-year-old when her mum Jodie Passey said she started to experience headaches. At first Jodie said the headaches were mild, but within days they became severe and debilitating. They resulted in loss of vision and balance.
Following a doctor’s appointment and several hospital visits, it was discovered that Keira had a rare and serious condition called Fulminant idiopathic intracranial hypertension (IIH). IIH causes high pressure around the brain and results in symptoms like brain cysts, vision changes, and headaches. Fulminant IIH is a particularly severe subtype that causes severe and rapid vision loss.
Despite the seriousness of Keira’s condition – diagnosed in 2023 – Jodie said the journey has been “frustrating” from the outset. Not only did one hospital turn Keira away on several occasions before a formal diagnosis, but more recently, Keira has developed worrisome symptoms that Jodie claims have not been properly investigated.
Describing how the family’s nightmare began, Jodie said, “In June 2023 she started getting headaches. It was around the time we had hot weather. They weren’t bad to the point that she needed tablets, so I said to try things like using her phone less, drinking water, and lying down in a dark room.”
Feeling completely disheartened and concerned for her daughter’s life, Jodie drove to another hospital and it led to Keira’s life-changing diagnosis. Keira’s condition required emergency surgery and ongoing medical care.
With no clear answers and tormented by worry for her daughter’s health, Jodie has set up a GoFundMe page to seek private consultation and further investigations. While struggling emotionally, she is determined to get the help Keira urgently needs.
The family’s ordeal highlights the challenges faced by patients and their families when seeking medical answers and appropriate care. Jodie’s relentless efforts to advocate for Keira’s health underscore the importance of timely and thorough medical attention in cases of serious illness.