Amber Ford, 31, from Scotland, was a ‘healthy’ individual before she became unwell in 2018, and now faces a grappling decision as she lives in fear of when she could die
A young woman living with multiple brain aneurysms that could burst at any moment has described feeling like “a prisoner”, constantly plagued by the thought: “Am I going to die today?”
Amber Ford, 31, from South Lanarkshire, Scotland, was a picture of health until she fell ill in 2018 and was diagnosed with mumps and Bell’s palsy, which causes temporary facial weakness. “I woke up one day and my face was all twisted,” Amber shared. “Since then, things haven’t been right – my bloods have been off, I’m always catching infections, things like that.”
By late 2020, Amber’s health issues escalated after starting out with severer headaches. She then developed alarming symptoms, such as extreme fatigue, vision disturbances, and waking up “choking” on her own vomit. “I was falling asleep at work, I was falling asleep standing up,” she revealed.
She continued: “I started having bad headaches to the point I couldn’t lift my head and the light in the room was too much. I was being sick in my sleep and I was waking up choking, I couldn’t breathe.”
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These symptoms were accompanied by vision “disturbances”, loss of leg function while laughing, and unusual behavioural changes. Despite describing her symptoms to a GP and hospital staff, she felt dismissed. “I knew there was something wrong with me for a long time but I was being told that I was bringing these issues on myself or I needed psychiatric treatment,” Amber expressed. She became “convinced” that throat cancer was causing her persistent sickness, noting “swelling” in her neck as well.
Thanks to her work’s private healthcare, Amber managed to get a CT scan on her neck in December 2023, which uncovered a “shadow” in her head initially thought to be an aneurysm. Following a referral and subsequent scan, a neurosurgeon identified a possible split artery in her brain, known as a fenestration.
In April 2024, an MRI confirmed the presence of the fenestration and also suggested Amber might have as many as three brain aneurysms. Family history points to a genetic risk; Amber’s grandmother, Isobel O’Neill, succumbed to a brain aneurysm at 56 years old. Amber revealed that there is “no way of knowing” the full extent of her condition without undergoing an angiography, a type of X-ray where a thin tube is inserted into an artery – but she warned that the procedure carries a risk of stroke.
She also explained that the fenestration in her brain is “not dangerous”, but because her aneurysms are located on this artery, her condition has become increasingly rare and risky. Now, Amber is grappling with two options – undergo an operation to place a metal coil on the artery to cut off blood supply to the aneurysms, risking a haemorrhage, disability, or death, or “do nothing” and living with the constant threat of rupture.
“I’m basically living in unbearable anxiety every day thinking, ‘Are they going to rupture today?’ and ‘Am I going to die today?'” Amber shared. “This has completely taken over my whole life … I don’t even leave the house because I start having panic attacks.”
She continued: “If I get the surgery, there’s a chance I could have a stroke, a haemorrhage, I could be left permanently disabled or dead. If they did rupture and I survived, it could mean I might never walk again, I might be blind, I might never speak. I feel like I’m a prisoner in this situation and it seems no matter what option I choose, the outcome just isn’t good.”
Amber mentioned that she has found an American doctor who specialises in complex aneurysm cases and who has worked with patients with similar conditions to hers. She said they have agreed to investigate her case further. In response, she set up a GoFundMe page to raise funds for a consultation and potential treatment, as she currently lacks the necessary finances. “I genuinely just want my life back, I want to have a family and enjoy my life,” she expressed.
To learn more, visit Amber’s GoFundMe page here: gofundme.com/f/brain-aneursym-journey.