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MOM-OF-ONE published shocking images of herself in a state of agony, while she revealed that she was suffering from "the worst known pain of medicine."
Amanda McTaggart suffers from both Ehlers-Danlos syndrome, a rare connective tissue disorder, and trigeminal neuralgia, a sudden and severe facial pain described by the NHS as "an electric shock to the jaw teeth or to the gums ".
GoFundMe
Now, as a result of Ehlers-Danlos syndrome, she has craniocervical and atlanto-axial instability and risks being decapitated internally.
Meanwhile, trigeminal neuralgia attacks can occur hundreds of times a day, making it one of the most painful conditions of all time.
Amanda, of Mullaghbawn, Northern Ireland, must take up to 36 tablets a day to cope with extreme discomfort and excruciating pain.
Amanda uses a wheelchair and a collar to stabilize her spine and neck, reducing her risk of internal decapitation.
GoFundMe
She said, "If the level of instability worsens and can not be managed with a neck brace and a specialist physio, I will consider major surgery overseas.
"This fusion of the cervix of the spine is performed only by two surgeons in the world, one in America and the second in Spain. The surgery alone costs £ 10,000.
Amanda also has many other ailments, including a long list of potentially life-threatening allergies.
Amanda spoke of the "absolutely horrifying" consequences on her family, Ethan, her four-year-old son, and launched an online appeal to GoFundMe to try to cover medical expenses and access the specialized treatments she needs.
Previously, the NHS had declared funding surgery for Ehlers-Danos, but that depended on the patient.
What is the Ehlers-Danlos syndrome?
A syndrome is a group of disorders and there are 13 individual genetic diseases that fall under the umbrella of EDS.
They all affect the connective tissue of the body that is responsible for keeping everything in place and providing support.
When you have EDS, your fabric becomes brittle and stretchy.
This can make you double or hypermobile, as well as cause other, much more serious problems.
Other symptoms may include:
- long-term pain
- chronic fatigue
- dizziness
- palpitations
- digestive problems
Other signs may depend on the person and type of EDS they have, although two people with the same problem may have different side effects.
Amanda said, "As a family, it has been absolutely horrible to cope.
"My little boy was removed from one pillar to the other during my hospitalization or my treatment.
"My parents live with me and my son full time and I have little to say in his everyday life, which tears the heart of a young mother.
"I miss his football, his swimming lessons and even watching him play outside.
"My allergies, due to one of the diseases I had with EDS, make it almost impossible to greet visitors and virtually anywhere without the threat of anaphylactic reaction. .
"I can develop a reaction at any time and at any time, including in the sun and at the water."
The most recent events for Amanda were confirmed by ambulance at the hospital on January 15 and February 20.
Amanda said, "The nursing team said to have seen no one for so long suffering from this pain, knowing that it was a hall of fame. ;surgery. The two weeks were spent on drug testing hoping that my reaction would not have been fatal.
GoFundMe
"I am now receiving 36 oral tablets a day, some for cancer patients, and four pain relief syringes. These are becoming stronger as my condition worsens and it is said that I will soon run out of medication to control my pain. "
On Wednesday, January 23, Amanda had a private scanner in London. The medical specialist confirmed atlanto-axial instability (internal decapitation) and craniocervical instability.
She must now return to London for another urgent examination, then immediately consult her specialist with her team of neurosurgeons and specialized physios, as this condition can be fatal if a bad movement of her neck occurs.
As a family, it was absolutely horrible to manage.
Amanda McTaggart
Unfortunately, none of these appointments are funded by the NHS and, given travel and accommodation costs, this amounts to a substantial sum.
Amanda said: "We have received help from the NHS for wheelchairs and walking aids.
"I'm really sorry that my poor family is witnessing this and doing their best to do it while in my room.In the future, I'm going to need a long-term treatment from of this team in London because no doctor is sufficiently informed of my health condition to treat me here. "
Amanda launches a call for financing via GoFundMe to help her get her surgery.
What is trigeminal neuralgia?
According to the NHS, trigeminal neuralgia is acute and sudden facial pain.
The NHS said: "It is often described as a sharp pain or as an electric shock to the jaw, teeth or gums.
"This usually happens during brief, unpredictable attacks that can last from a few seconds to about two minutes. The attacks stop as suddenly as they begin.
About 10 in 10,000 suffer and the cause of this disease is unknown.
The NHS added: "It is possible that the pain may improve or even disappear completely for several months or years at a time (remission), although these periods tend to decrease over time."
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