Since 2016, families affected by #AcuteNecrotizingEncephalopathy have been gathering on Facebook in the hope of providing support and comfort for families diagnosed with ANE and building a community.
These families have a load of questions in regards to this mysterious disease that affects mostly their children.
Their stories all echo one another:
– “They sent us home, said it was only the flu”
– “Our child went into seizures and they (the Hospital) didn’t know what was wrong”
– “My child was unresponsive for days and they still didn’t know what was going on”.
Emergency Hospital Staff are not trained or experienced enough to recognize the early symptoms of neurological disease as there is so few cases brought into the emergency every year.
“Doctors and Families need to work together in finding a solution to have quick treatments for these individuals” says mother of a genetic ANE’s survivor and co-founder of ANE International, Rachel Quesnel Shilletto, “Families all around the world need to be educated by doctors in asking the right questions to get treatment. We are human and we all have failings especially under pressure but we are desperate to meet the needs of our ANE families.”
She goes on to add:
“There’s so much variety in the outcome of the disease including at the very core of it being genetic and non- genetic. Furthermore, recovery is not the same for all ANE survivors. I believe that this can be linked to the cytokine storm that occurs and causes ANE but at this point there’s not enough knowledge to be sure. ANE although discovered in 1955 is still very much in its infancy stage”.
“It has always been my million dollar question about the good outcomes vs the more severe. Also, sometimes ANE (the classic symmetrical lesions, including Thalami) don’t show on CT and MRI initially and therefore ANE is misdiagnosed.” adds Kim Smith, mother to a per-novo ANE survivor.
With a 30% mortality rate according to the medical papers, it’s really hard to say if there’s not many more ANE cases out there, as ANE is secondary to a viral infection that can be deadly such as influenza and HHV-6.
The possibility of ANE must be in placed in the minds of physicians treating complications to Influenza with ANY neurological symptoms.
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