World's most painful condition: Help Emily fund treatment

Hi, my name is Rachel and I am fund-raising for my sister who has been suffering from the worst form of Bilateral Trigeminal Neuralgia, also nicknamed the 'Suicide Disease', with no relief, for 2.5 years.

Emily was previously very healthy and happily beginning life with her new husband.

Shortly after her Booster and first Covid infection, she developed a strange sharp pain in tooth. She sought dental help, however nothing showed up on any scans, and there was no pathology to indicate anything was causing pain. Additionally, no painkillers were helping ease the pain. We also lost our Dad in tragic circumstances, exacerbating her despair.

Over the next few months, the pain spread and escalated rapidly. Imagine every single one of your teeth being crushed and pulled out by an invisible dentist all day long. She could only toss and turn and scream all day.

She then started developing new symptoms: painful electric shocks, burning and stabbing pain through her whole face, on top of the excruciating teeth pain, which had spread to all her top teeth. This understandingly was extremely scary for Emily, and her mental health declined.

She can't touch her face without being hit with lightning shocks that bring her to her knees. She can't move her face, talk, smile, eat, sleep, brush her teeth, have a conversation with friends.

Emily has been forced to quit the two careers that she loved. She lost her house. She and her wonderful supportive husband are currently still living with mum and I. Andy has also been forced to leave his job so he can care for Emily. After 2.5 years, she still does not have a formal diagnosis, or any medication or treatments that provide any relief. She has what is widely regarded as one of the most severe chronic pain conditions known in medical practice.

We have learnt that it is extremely difficult to get medical treatment for atypical conditions in Australia, especially for neuralgia, which is an already incredibly complex condition. She has exhausted twice over what Adelaide can offer for medical treatment. Em has already sought treatments in Sydney and Melbourne (some being over $15k each), and even went as far as going to Europe to seek alternative treatments. However, again, nothing has helped the pain or given her relief.

Despite setback after setback, neurologists telling her to “live with it” and that “there is nothing that can be done”, she is a fighter and determined not to give up.

There are several clinics in the US that treat complex pain: one is called the SPERO clinic, but we have been quoted over $100,000 AUD!

Similar pain rehabilitation centres cost that much, or more.

There is a new neurosurgery being offered in Australia called an MRI Guided Focused Ultrasound. Emily would be placed into an MRI machine where a groundbreaking technique delivers precisely focused ultrasound waves to specific brain region called the Thalamus to interrupt pain signals.

This has given Emily a 50/50 chance of finding some relief. This is better than the 'no options but to put up with it for life' we have received so far.

Unfortunately it is so new that it is not covered by Medicare, so it would cost over $40,000 plus travel, and rehabilitation costs.

I am hoping to raise enough funds for these huge ongoing medical costs and for her to travel to access treatments.

Thankyou for reading our family's story. We hope we can also bring awareness to the suffering of people with invisible illness post-vaccine and/or post viral.