A woman has revealed her race against the clock for life-saving surgery due to the progression of a disease that could leave her brain and spine crushed.
When Jessica Riggs started suffering daily from headaches and backache, she assumed it was due to her busy lifestyle. The 32-year-old, from Saltash, Cornwall, then began experiencing frequent spells of dizziness, fainting and pressure in her head whenever moving or putting strain on her body.
An active runner and hiker, she also pushed herself to the limits within her former line of work as a polar expedition guide - but that all came to an end in June 2024. Jessica was diagnosed with filum disease - which affects the spine and nervous system - and now she's on a race against the clock of six months to halt the progression of the disease.
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Otherwise, she risks her brain and spine being "crushed" due to the intense pressure and lack of elasticity, which could leave her permanently paralysed. "This is a lifelong and limiting disease," Jessica, a marine biologist, said.
"I already have the beginning stages of paralysis, with regular numbness and pins and needles in all my limbs, as well as my back. If I don't get this surgery in six months, my symptoms will develop further. Once there are signs of more progression, there is little specialists can do to alleviate my condition.
"I feel deflated, frustrated and unmotivated, as I've had to give up my dream career and my quality of life is now very low." Jessica noticed something wasn't quite right 10 years ago and sought out medical advice. She was initially diagnosed with Chiari malformation, where the brain bulges through the back of the skull.
Though, in November 2023, while working in Antarctica, she quickly realised the extent of her condition due to worsening symptoms. As she claims filum disease isn't yet recognised in the UK, she had to go overseas to a private clinic in Barcelona for an official diagnosis.
The condition itself isn't rare, but in most cases, it's noted straight after birth since it forms in the womb. As Jessica's symptoms didn't prevail until much later in life, her case is now severe - and as a result, she claims there is no treatment available for her in the UK. While the private clinic offers the surgery needed, it comes at a price - an estimated £25,000. She said: "I was relieved to find clarity and answers, but I am frustrated to find out I was born with this condition.
"If I was diagnosed and treated in childhood, my prognosis of eradicating the symptoms would have been much higher. In most cases, people born with this remain stable throughout their lives - but my symptoms have progressively gotten worse, especially in the last 12 months.
"Doctors kept saying I was an interesting case, but they didn't know how to treat me. I'm grateful to have found a treatment, but it's making me stressed that it comes with financial strain. It's not just the cost of treatment, but the loss of earnings during the long recovery process, too."
Jessica is currently raising funds on GoFundMe, with £4,722 raised out of £25,000 so far. The surgery involves going into the spinal cord, cutting the filum terminal - a type of fibrous tissue - to release pressure and then reattach this to the base of the spine, giving flexibility. It's hoped if all goes well, she should be able to return to work within a year.
For now, though, she's remaining hopeful and has preemptively booked herself in for the invasive operation on 10 December 2024. She added: "If I'm not able to transfer funds for my surgery a week before, then it'll have to be postponed. Without it, I wouldn't be able to be active and it'll limit my ability to be independent physically and financially. I still try to run a couple of times a week, but it takes me days to recover now. I'm struggling to do simple tasks, such as gardening, washing and tying my shoelaces, too.
"As I get so tired, I don't socialise much, but I'm trying to manage my symptoms by adapting my behaviour and lifestyle. Currently, I'm dealing with insomnia, blurred vision, and urine infections, as well as a range of other debilitating symptoms. It's a fight against the clock to save my life.
"My case is now severe and I hope my story raises awareness for this disease. It's something that is often misdiagnosed, especially in adults, until it's too late. If you think something is wrong, always get a second opinion and use online screening tools wherever possible. I'm remaining hopeful that while I won't get my old life back, that I'll still be able to have a future."
