A MUM-OF-ONE has released shocking pictures of herself in agony, as she revealed she suffers ‘the worst pain known to medicine’.
Amanda McTaggart suffers from both Ehlers-Danlos syndrome, a rare genetic connective tissue disorder, and trigemenal neuralgia, sudden severe facial pain which is described by the NHS as “like having an electric shock in the jaw teeth or gums”.
Now, as a result of Ehlers-Danlos syndrome, she has craniocervical and atlantoaxial instability and risks being internally decapitated.
Meanwhile, the trigemenal neuralgia attacks can occur hundreds of times a day – leading to it being described as one of the most painful conditions ever.
Amanda, from Mullaghbawn, Northern Ireland, has to take up to 36 tablets a day just to cope with the extreme discomfort and excruciating pain.
Amanda uses a wheelchair and a neck collar to stabilise her spine and neck which lowers her risk of internal decapitation.
She 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.”
Amanda also has many other conditions including a long list of life-threatening allergies.
Amanda has spoken of the “absolutely horrendous” toll it has had on her family and four-year-old son Ethan and has now set up an online GoFundMe appeal to try and help cover medical fees and access the specialised treatment she needs.
Previously the NHS has said they do fund surgery for Ehlers-Danos, but it depends on the individual patient.
What is Ehlers-Danlos Syndrome?
A syndrome is a group is disorders, and there are 13 individual genetic conditions that fall under the EDS umbrella.
They all affect the body’s connective tissue which is responsible for holding everything in place and providing support.
When you have EDS, your tissue becomes fragile and stretchy.
That can make you double jointed or hypermobile, as well as causing other much more serious issues.
Other symptoms can include:
- long-term pain
- chronic fatigue
- digestive problems
Other signs can depend on the person and the type of EDS they have, although two people with the same condition might have different side effects.
Amanda said: “As a family this has been completely horrendous to cope with.
“My little boy has been pulled from pillar to post while I am either in hospital or getting treatment.
“My parents live with me and my son full time and I have little say in his day to day life which is heart-breaking as a young mother.
“I miss out on his football, his swimming lessons and even so much as seeing him play outside.
“My allergies due to one of the list of conditions I have due to EDS, makes it almost impossible to have visitors and to basically go anywhere without the threat of an anaphylactic reaction.
“I can develop a reaction to anything at any time, including sunlight and water.”
The most recent events for Amanda were being blue-lighted to hospital by ambulance on January 15 and February 20.
Amanda said: “The nursing team said they had not seen anyone in this level of pain for a very long time, bearing in mind this was a surgical ward. The two weeks were spent trialling medications while hoping I didn’t have a fatal reaction.
“I’m now on 36 oral tablets per day – some being medications used for cancer patients – and four syringes of liquid pain relief. These are constantly being upped in strength as my condition worsens and have been told I will soon run out of medication options to control my pain.”
Amanda had a private scan in London on Wednesday, January 23 and the specialist doctor confirmed atlantoaxial instability (internal decapitation) and craniocervial instability.
She now has to go back to London for another urgent scan and then to see her specialist straight after with his team of specialist neurosurgeons and physios as this condition can be fatal with any wrong movement of her neck.
As a family this has been completely horrendous to cope with.
Unfortunately, none of these appointments are NHS funded and taking into consideration the travel and accommodation, is all amounting to a large sum.
Amanda said: “We have had some help with wheelchairs and walking aids from the NHS.
“I feel so sorry for my poor family having to witness this and trying their best to hold it together while in my room. Going forward I am going to need long term treatment from this team in London as no doctors are knowledgeable enough in my condition to treat me here.”
Amanda is appealing for funding via GoFundMe to help her get surgery.
What is trigeminal neuralgia?
According to the NHS, trigeminal neuralgia is sudden, severe facial pain.
The NHS said: “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 stop as suddenly as they start.”
Approximately 10 out of every 10,000 people suffer from it, and the cause of it is not known.
The NHS added: “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.”
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