Take Action By:-

#ANEandUs  #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories   #rarespecialpowers #brain #ANEandMe

Take Action

Find out more details at: http://aneinternational.org/ane/awareness-day/

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Dr. Rumey on Neurological Signs in a Viral Illness.

We have been fortunate to speak to some physicians that have treated ANE patients. Here is Dr Peter Rumey MD from Holland Bloorview Rehabilitation Hospital and his words regarding neurological symptoms and ANE.

On treating a recurrence in a patient with a previous ANE episode.

I am not sure I could be specific about warning signs for ANE specifically for MD’s in the ER , but I would say that in the case of families who take their child in for assessment when they are concerned about a deterioration in their child, if there has been a history of this and ANE in the past, highlight this and draw the parallels to the physician’s attention.

On treating a previously well child that has unusual symptoms accompanying a viral infection.

If there is a sign of neurologic deterioration in your child with an acute illness, such as double vision, weakness in one arm or leg, a new limp, an inability to stand, walk, speak  or new drooling ( not related to teething) and the MD says it is just the flu.  Ask them to explain how this is the flu; when the flu in the past has not lead to a localized weakness or imbalance of neurological function.  Try to get them to take a second look and think outside of the box.  I hope that this is helpful.

#ANEawarenessday #Virus #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ANEandMe  #bloorviewchildrensrehabhospital

Find out more details at: http://aneinternational.org/ane/awareness-day/

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Did You Know….Fast Facts

#ANEandUs #ANEawarenessday #Virus #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories 

@encephalitisava @EncephGlobal  @DrPas84Ele @GlobalGenes   @OutrunRare

ANE - Fast Facts (1)

Find out more details at: http://aneinternational.org/ane/awareness-day/

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Tobin’s Story

Tobin’s video is a joy to watch as he makes a remarkable recovery from ANE. His family who live in New Zealand have been hit very hard with ANE. Tobin’s older sister Lucia has had multiple episodes of ANE including one triggered by Chicken Pox and has suffered severe outcomes. This family have 4 children and all have the genetic mutation. Tobin’s parents were told at one point to take him home to die. Today he is an energetic young boy who has just celebrated his 7th birthday with his twin sister.

 #ANEawarenessday #RanBP2 #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy  #patientstories   #kiwistrong  #notmycircus  

Find out more details at: http://aneinternational.org/ane/awareness-day/

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In Loving Memory

***WARNING: YOU MAY NEED TISSUES**

ANE is a sudden and shockingly devastating disease that leaves families often reeling & torn apart in it’s wake and this is especially true for our families that have lost a loved one to Acute Necrotizing Encephalopathy.  ANE targets mainly the high risk pediatric population and the rate of lost lives is a desolating 30%. The death and loss of a child is frequently called the ultimate tragedy. Nothing can be more traumatising or heartbreaking. This is mainly due to the fact that the relationship between parents and their children is among the most intense in life. It feels unnatural to outlive a child. All bereaved parents lose a part of themselves.

This video is to honour our families and their loved ones.

#ANEandUs  #RareDisease #ANEawarenessday #braininjury #AcuteNecrotizingEncephalopathy 

You can read and see more stories at: http://aneinternational.org/ane/stories/

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Did You Know…..Mortality Rates

#ANEandUs  #RareDisease #ANEawarenessday #Virus #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare 

DYK - Mortality with Robin Williams.jpg

Find out more details at: http://aneinternational.org/ane/awareness-day/

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