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Rare Diseases – Not As Rare As You Think

Many people are fighting a battle against diseases that we know nothing about. We know many incredibly strong and resilient people going through ordeals similar to ours. Read some of their powerful stories and help us in the fight against rare diseases!

Lindsay Carter

Lindsay Carter, is a young 19 year old man who suffers from a Brain Tumour, which has also caused him to develop onset Epilepsy.

In 2011, Lindsay began getting unexplainable symptoms of ‘headaches, nausea, vomiting and fatigue’. ‘Despite visiting many doctors and specialists between 2011 and 2013, it wasn’t until July 2013 when Lindsay suffered a tonic clonic seizure that the hospital ordered MRI scans which revealed a brain tumour in his left temporal lobe.

This part of the brain is a difficult area to operate on due to the risks to important cognitive function’.

The Intractable Epilepsy that has been caused by the Brain Tumour means that it is ‘not able to be effectively controlled by pharmaceutical medication’. To make things worse, ‘he has also suffered allergies and severe side effects from some of the pharmaceutical drugs’.

‘He can experience up to 20 seizures per day including a combination of different types of seizures, some lasting for up to 2 3/4 hours with speech arrest, where he can lose complete ability to speak and often also the ability to understand others’.

In 2014, Lindsay and his family travelled overseas, in hope to find a better solution. During this time, they were introduced to Medicinal Cannabis. The results were profound as ‘it helped reduce the size of his brain tumour’, as well as reducing ‘the swelling around the tumour’, which in fact allowed him to control his symptoms and reduced his tonic clonic seizures.

When he returned, he was the first patient approved for schedule 9 Medical Cannabis in Australia and was approved for the use of Cannabis oil and dried Cannabis for vaporising.

Due to the regulations here in Australia, Lindsay has had an ‘inconsistent supply of legal medicine’. Like most patients, they have struggled to get an effective and ‘consistent supply of Medical Cannabis in the correct ratios and potency’ that he requires.

His tumour is still smaller than when diagnosed but when he cannot get the necessary access, he suffers from excruciating amounts of pain and the seizures become uncontrollable.

Quoted by Lanai Carter 2018.

Facebook: https://www.facebook.com/thethinginhishead/

Danielle Glenister

‘My life was changed in an instant in 2014 when I was involved in a nasty car accident. Which resulted in ‘my car being a write-off, as was the hard-earned career that I adored – replaced by a much more arduous full-time job: recovery and rehabilitation and a handful of daily medications that rendered me a drooling zombie’.

After four years of ‘countless failed spinal procedures, I was progressively getting worse, the 24/7 pain in my body was unbearable and after years of inconclusive tests, answers eventually came in the form a rare connective tissue disease called Ehlers-Danlos Syndrome. One that not only qualified me as a contortionist but also as someone living with an invisible disability’.

‘I tried every prescription drug, treatment, and procedure in my Specialist’s arsenal. Nothing worked until I discovered Medicinal Cannabis oil. Overnight my pain had vanquished, leaving me clear headed, functional and able to come off the heavy opioid painkillers, anti-seizure meds, anti-depressants and muscle relaxants. Then the Australian government abruptly blocked the CBD oil from being delivered to Australia.

‘I quickly regressed back to a life of unimaginable pain. Until, at 4 am one sleepless night, I found myself Googling “Assisted Suicide in Switzerland’ because I just could not see a way where I could go on’. With little choice, Danielle moved to the USA, specifically, ‘Los Angeles because Medical Cannabis was legal and relatively easy to access. Navigating the near impossible bureaucratic labyrinth to gain access to a prescription of Medical Cannabis in Australia proved inaccessible and not within reach financially’.

Thanks to Medicinal Cannabis ‘I am now able to work for the first time in over four years, I am back at university studying and I am on zero prescription pain medications. Medical Cannabis changed my life and I shudder to think where I would be if I hadn’t discovered it’.

Quoted by Danielle Glenister 2018.

Instagram: https://www.instagram.com/thechronicills/

Joshua Brancatisano

‘My name is Joshua and in late 2014, I was diagnosed with Epilepsy’. This means ‘I suffer from Grand Mal Seizures resulting in frequent trips to Hospital’. During the examination period, an MRI discovered ‘three lesions on my Brain’.

This meant ‘I had to undergo a double biopsy at Wollongong Hospital’. Surprisingly, ‘I came out of the surgery feeling quite well’, so much so, ‘I thought I was going to be ok, and then I began having more frequent fits and shaking’. This left ‘me wheelchair bound’ and ‘resembling someone who would have been suffering from Parkinson’s Disease’. ‘I was referred to Westmead Hospital, where I am still having to undergo transfusions of white blood cells, as my white blood cells are infected and are attacking the right-hand side of my motor cortex’. To complicate things, ‘they still aren’t 100% sure that this is the problem’.

The decision was made to ‘put me on a type of chemo to kill off some of the white blood cells’. This has partially worked, allowing me to ‘slowly get back on my feet. The next step for me is to wipe out my entire immune system, not knowing if it will fix the problem or not since no one in the world literally knows what is wrong’. The concern is that the‘immune system takes 7-9 months’ to recover and it is extremely risky.

‘I’ve lost many irreplaceable people, I’ve lost my independence and each day is a struggle but I just push on with the strength and support of those around me.

I feel Medicinal Cannabis will not only reduce my shaking but potentially ‘stop my Tectonic Seizures vastly’, while allowing me to reduce, if not remove ‘the majority of the pharmaceutical pills which are damaging my Liver’.

Quoted by Joshua Brancatisano 2018.

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