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<div>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.
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<div>Emily was previously very healthy and happily beginning life with her new husband.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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!
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<div>Similar pain rehabilitation centres cost that much, or more.
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<div>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.
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<div>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.
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<div>Unfortunately it is so new that it is not covered by Medicare, so it would cost over $40,000 plus travel, and rehabilitation costs.
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<div>I am hoping to raise enough funds for these huge ongoing medical costs and for her to travel to access treatments.
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<div>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.
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Anthony Collins

Anonymous

James Yon

Alex Shutt

Claudia Hughes

Debra Sloan

Leona George

Christina Robert

Megan Van Hover

Katrina Moore

Valerie Hudson

Nareg Dekermenjian

Gay Roberts

Mandy Mark-Seymour

FAITH M BROHIER

Cori Mark-Seymour

World's most painful condition: Help Emily fund treatment

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

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Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

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desktop

Android v12.11.0 and above

Platform is Android

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Payment method type group to be vaulted on success

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Payment Identity Transfers ATO Risk Check (Targeted) - Production

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Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

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Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

currencyCode

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

writePath

Stream Notification

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

unclaimed charities

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AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

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Native 11.3.0 and above

Influencer - Prod

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Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

Excluded funds - Video Sharing

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

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Localized Currency

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

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challenge-fundraisers

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New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

World's most painful condition: Help Emily fund treatment

Still $8,304 to go. Help us build momentum.