A woman has been diagnosed with “the most painful condition” in the world, and has expressed that it’s a “living hell.”
For nearly three years, Emily Morton, 28, from Australia, has been in agony after developing a mysterious and excruciating condition in early 2022.
At the time, Morton’s life seemed picture-perfect. She had just married Andy, the love of her life, and the couple was preparing to start a family. However, everything changed when a persistent pain began radiating from her teeth.
Morton was diagnosed in 2022. Credit: GoFundMe
Initially, a visit to the dentist revealed no issues, but within days, the pain escalated, spreading throughout her mouth and to both sides of her face.
Describing her experience, Morton told news.com.au: “Imagine having a dentist drill into every single one of your teeth 24/7 and there is nothing you can do to stop the pain. I began experiencing electric shocks going through both sides of my face, triggered by anything that touched my face.
“It would hurt when I smiled, talked and ate. All normal things. There are no words to describe this degree of pain. It is like being struck by lightning; it makes you want to fall to the ground and scream.”
After numerous dental and medical consultations failed to provide answers, Morton underwent extensive tests, including brain scans and bloodwork.
She was ultimately diagnosed with atypical trigeminal neuralgia, a rare and debilitating variant of trigeminal neuralgia.
The condition impacts the trigeminal nerve, which transmits sensory signals from the face to the brain.
Even a light touch can trigger jolts of pain. While the condition typically affects one side of the face, Morton suffers from pain across both sides.
Morton’s condition leaves her in agonizing pain. Credit: GoFundMe
Doctors informed her that atypical trigeminal neuralgia is regarded as the “most painful condition known to medicine.”
The disorder is colloquially referred to as the “suicide disease” because the unrelenting pain can lead sufferers to contemplate ending their lives.
“The condition has taken everything from me. It takes over my entire existence. My entire life is on hold while I search for something to give me relief,” Morton shared. “I just take it day by day and hold on to hope.”
Morton’s diagnosis has profoundly altered her life. Unable to work, she and her husband have moved back in with her mother.
The couple has spent tens of thousands of dollars on treatments, including some costing over $15,000 AUD ($9,300 USD) each.
Morton even traveled to Europe for alternative therapies, but none have alleviated her condition.
Morton has sought help around the word. Credit: GoFundMe
However, there may be a breakthrough on the horizon.
Morton is considering a new neurosurgical procedure available in Australia called MRI-Guided Focused Ultrasound.
The innovative treatment uses precisely targeted ultrasound waves to disrupt pain signals in the brain’s thalamus region.
The procedure offers a 50/50 chance of relief but comes with a steep price tag of over $40,000 AUD ($25,000 USD), which Medicare does not cover. Additional expenses for travel and rehabilitation add to the financial burden.
To help cover the costs, Morton’s sister, Rachel, launched a GoFundMe campaign, which has already raised $20,000 AUD ($12,000 USD).
“I was blown away and so thankful to everyone who has donated. We are halfway to our goal,” Morton said.
Morton’s treatment is very costly. Credit: GoFundMe
Despite the challenges, Morton remains determined to find a cure. She dreams of dedicating her life to advocating for others with invisible illnesses.
“In 2024, I believe there must be technology out there, somewhere, that can at least help. My plan is then to dedicate my life to becoming a fierce advocate for people with invisible ‘mystery’ illnesses. I want them to know that they are not alone.
“I want them to hope and trust in the science that is emerging, and I want us to come together and fight for better healthcare,” she said.
In the meantime, Morton is focusing on appreciating the small moments in life.
“People who have this condition are honestly some of the bravest people to walk this earth,” she said.
“Usually it is diagnosed after the age of 50. For those that are young, it is utterly devastating. While it is not a terminal illness, it does take away your life.”
