'Grab this chance to save her life': Wanstead woman battling chronic illness urgently needs £200k for surgeries
- Credit: Clara Maguire
A Wanstead woman suffering with severe pain and seizures needs £200,000 for potentially life-saving surgeries she cannot receive on the NHS.
Kirstin Maguire, 36, is fundraising the money for surgery to address spinal disorders which started when she developed post-viral syndrome and myalgic encephalomyelitis aged six.
As a result, the web of fibrous tissues throughout Kirstin’s body has degraded over time.
It has spread to the ligaments in Kirstin’s neck, meaning the weight of her head is compressing her brainstem, spinal cord and jugular vein, which is responsible for automatic functions including heartbeat and breathing.
This is known as craniocervical and atlantoaxial instability and can constitute a major threat to life.
She now needs spinal fusion and major spinal cord surgery to relieve this pressure, which her family hope will also alleviate some of her chronic symptoms, such as widespread severe pain, seizures, migraines, memory loss and exhaustion with persistent insomnia.
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However, the treatment is not available in the UK.
“The reason you can’t get it on the NHS is a political hot potato,” explained sister Clara.
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“For many years, the only treatment for chronic conditions – including ME and fibromyalgia – is graded exercise therapy (GET) and CBT. Recently they have come under quite a lot of scrutiny.”
Many chronic illness patients believe GET is ineffective and claim it can be actively harmful.
Last month, the National Institute for Health and Care Excellence paused publication of its updated guidelines on the diagnosis and management of ME, which would have removed GET as a recommended therapy.
The fundraiser is already a quarter of the way towards target and Clara said the generosity had been “absolutely overwhelming”.
“There’s people that have given money that I know don’t have money,” she said.
She said Kirstin is an “amazing person” who “manages to always figure out how to make the best of the situation” but that her worsening condition had left her feeling hopeless.
Clara said the surgeries were a “light at the end of the tunnel” and that, if her health improved, Kirstin would spend her time advocating for others with chronic illnesses.
The fundraiser says they "need your help urgently": "We were preparing for a life when palliative care was the best we could do. But that’s all changed! We need you to help us grab this chance to ultimately save Kirstin’s life and to ensure the rest of her life is of the best quality possible."