Mother shares shocking pictures of herself in agony as she reveals she suffers 'the worst pain known to medicine'
- Amanda McTaggart, from Northern Ireland, has extreme form of medical pain
- Has rare genetic connective tissue disorder and risks 'internal decapitation'
- She takes up to 36 tablets a day just to cope with the excruciating pain
- Only two doctors, one in America and one in Spain, can do required surgery
A mother with an extremely rare tissue disorder has told how she could be internally decapitated at any moment.
Amanda McTaggart, from Mullaghbawn, Northern Ireland, suffers from both Ehlers-Danlos syndrome, a rare genetic connective tissue disorder, and trigemenal neuralgia, which is described by the NHS as 'like having an electric shock in the jaw teeth or gums'.
She has now shared distressing photos of her in extreme pain the conditions leave her in, unable to tend to four-year-old son Ethan.
Amanda McTaggart, from Mullaghbawn, Northern Ireland with her four-year-old son Ethan when she is not suffering from the debilitating pains
Amanda has a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a progressive condition with no current cure or specific treatment and risks being internally decapitated
Amanda has to take 36 tablets a day just to cope with the extreme discomfort and excruciating pain of living with the conditions
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Amanda has to take 36 tablets a day just to cope with the extreme discomfort and excruciating pain of living with the conditions.
As a result of her Ehlers-Danlos syndrome, she has craniocervical and atlantoaxial instability, which risks her being internally decapitated because of joints dislocating 'daily'.
She also has trigemenal neuralgia attacks, which can occur hundreds of times a day, leading to it being described as one of the 'most painful conditions ever'.
What is Trigeminal neuralgia?
Trigeminal neuralgia is sudden, severe facial pain. It's often described as 'a sharp shooting pain or like having an electric shock in the jaw, teeth or gums'.
It usually occurs in short, unpredictable attacks that can last from a few seconds to about two minutes. The attacks can stop as suddenly as they start, and occur regularly over time.
It's possible for the pain to improve or even disappear altogether for several months or years at a time (remission), although these periods tend to get shorter with time.
See your GP if you experience frequent or persistent facial pain, particularly if standard painkillers, such as paracetamol and ibuprofen, don't help and a dentist has ruled out any dental causes.
Around 10 people in 100,000 in the UK develop it each year
During on emergency hospital visit in January, Amanda spent two days in excruciating nerve pain, which made it hard even to eat.
To manage the pain when in hospital she was put onto a morphine.
However, she is now allergic to the painkiller, along with a long list of other life-threatening conditions, and is currently she wearing a carbon filter mask to help lessen the amount of triggers entering her body.
Amanda also uses a wheelchair and a neck collar to stabilise her spine and neck.
Her family are concerned that she is beginning to run out of options for keeping to horrendous pain at bay.
In a post on the fundraising site GoFundMe, a relative explained the 'absolutely horrendous' toll it has taken on their family.
They said: 'If the level of instability worsens and cannot be managed with a neck brace and specialist physio alone, I will be looking at major surgery overseas.
'This spinal neck fusion is only undertaken by two surgeons in the world, one in America and the second in Spain. The surgery alone costs £10,000.'
'I'm sure you can all understand that we as a family want and need to help Amanda as much as possible, as Amanda has a beautiful wee 4 year old boy that she's not fit to look after on her own at the minute.
'This is our aim and the aim for Amanda to be able to enjoy seeing her beautiful wee man Ethan growing up.
The family have now set up the donations page in the hope of helping to cover the medical fees and access the extremely specialist treatments, which is not currently funded by the NHS.
Donations had reached £6,393 at the time of writing.
