Author: Kate Smith

Did You know…Stages of Diagnosis

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#ANEandUs   #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #influenza #flu  #vaccine

DYK -Diff Diagnosis

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The Flying Dutchman & an ANE survivor

ANE is an Ultra Rare Disease. Adults that have endured an ANE attack are even rarer. We thank one of our ANE members for sharing a peek at her life.

Where do you live?
I live in Sneek, a small place in the north of the Netherlands (near Germany)
What is your favorite food?
I like spareribs. In a restaurant I usually take spareribs. I have some friends; they are cooking with love and interest for food. I love it to eat with them. Doesn’t matter we eat; what they make it is all good!
How old are you?
I am writing this on the 9th of January and tomorrow I will become 41.
What do you do for fun?
At this moment my life is all about working on my body. I have been ill last years. And each time my legs and energy are getting worse. So if I don’t practice then I am taking my rest by watching TV/Netflix, playing with my cat (Cootje), Face Book or just rest….
In the summer I like to go outside. I love to be on the water every day. As a volunteer I am leading a group of volunteers by canoeing. I was a member of a rescue team by my sailing club, I like to sail. Unfortunately I can’t do it anymore. But I am sailing with a group of people with a handicap. That gives me the possibility to enjoy the water as long as I want.
What advice would you give for someone with ANE and what gives you hope?
I am very glad to know my diagnosis. I know it now for a little more than a year. I am happy that the medical area around me knows what to do if I get ill. The little things in life are getting more important in life. Tomorrow it’s my birthday and each year I celebrate it because you never know if you can celebrate it over a year again.
It is hard to live with the damage of ANE. My legs and arms are weak, my energy is low, learning and concentration are also difficult. The only thing I can do is enjoy the things which life makes more beautiful. I don’t think a lot about the future. I live here and now, that gives me strength to enjoy the people around me and each step that makes me better.
And I am so glad that I found you. I am not alone anymore with my struggle. I am not an alien anymore (living with a handicap without knowing what it is, is hard and difficult). It is so good to know that Kim & Rachel are fighting for our disease. That gives me hope and strength. They are my heroes!
And I must say. I am very lucky. Have you ever heard of Epke Zonderland? He has been an Olympic champion and world champion in gymnastics/horizontal bar. He is very strong. And the best of all, he is family to me. (The son of a cousin of my mother).
That gives me a lot of strength. If he can do the things he is doing than I can live with ANE. Our DNA is strength.
Epke Jan Zonderland is a Dutch gymnast and 2012 Olympics gold medalist in the high bar. He also won the 2013 World Championship and the 2014 World Championship on the high bar. He is nicknamed “The Flying Dutchman”.

 

#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare  #DutchStrength

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Kate’s Story

Kate is from Australia and has been confirmed with the genetic mutation RANBP2 associated with ANE. Her’s was not an inherited mutation but created new in her (de novo). She has had 2 ANE attacks, one as a baby and one as a teen. Although Kate had multiple brain stem lesions that many articles state are predictive of a more severe outcome, unlike most ANE patients, she did not go into a coma. 2nd attacks are also said to have far worse outcomes than a first attack. However, as Kate has had no lasting physical disability and her Acquired Brain Injury is far less severe than many of our members, Kate’s journey leaves all of us with many questions. The contradictory reports are the reality for many ANE families looking for answers. ANE is an under researched & under diagnosed disease.

Read Kate’s story –http://aneinternational.org/ane/stories/australian-story/

 

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#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe    

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Logo Reveal – Did You Miss It?

For those that may have missed it earlier, we are excited to again share our new Logo

 

The hallmark of ANE is the symmetrical lesions seen on MRI and CT, just like a butterfly’s wings. Mara Pianosi, the artist who painted our “butterfly brain” kept this in mind when she began planning our new emblem within the logo. Mara also kept the brain to a treelike structure including the trunk. This was in reference to our previous logo and a tree’s regrowth and hidden roots. The butterflies, also, represent the lost lives to ANE and the struggles just like when a butterfly first emerge. We hope you like it!

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#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu

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Help Us Save Lives

Copy of Copy of 1st International #ANEawareness Day31st July 2018Join Us and help us to Raise Awareness ofAcute Necrotizing Encephalopathy (1)

#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu

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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 Rumney 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 neurologic function.  Try to get them to take a second look and think outside of the box.  I hope that this is helpful.

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#ANEandUs  #RareDisease #ANEawarenessday  #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #InfectionInducedAcuteEncephalopathy #ANEC 

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Ysadore’s Battle

unnamed-1” Born a healthy baby, he contracted a virus, HHV6, and within minutes, literally minutes, went from a baby ahead of the developmental age appropriate growth chart to a ten month old in a vegetative state with 24 hours to live.”

Ysadore’s mother shares their story……..

http://aneinternational.org/ane/Ysadore%20-%20USA/

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 #RareDisease #ANEawarenessday #HHV6 #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC #FacesOfANE #ANEandMe  #USAStrong

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Did You Know….. Treatments

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#ANEandUs  #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers 

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Acute Necrotizing Encephalitis (Of Childhood), a Blood-Brain Barrier Perspective.

“This is a blog post following a request by a page follower on my Facebook account to provide an “layman” perspective on acute necrotizing encephalitis (ANE), also referred as acute necrotizing encephalitis of childhood (ANEC). This is a very short and surely incomplete summary but it should be a great starter to give the current perspective of this condition through the lens of the blood-brain barrier.

It is a condition that was firstly discovered by Mizuguchi and colleagues in 1995 firstly described in infants and toddlers (http://jnnp.bmj.com/content/jnnp/58/5/555.full.pdf). It was firstly described in patients from Asian origin (Japan). It was initially described to occur during the winter period, in particular with region that had experienced an influenza A outbreak. The main clinical feature of the disease marked by the presence in the magnetic resonance imaging (MRI) of increased water content inside the brain, mostly associated with edema (brain swelling). This increased water content can only be explained by the opening of the blood-brain barrier”.

Excerpt was from the following post on   to continue reading the rest of this quite fascinating and informative blog post see:

https://scientistabe.wordpress.com/2017/10/05/sciencesbbb-acute-necrotizing-encephalitis-of-childhood-a-blood-brain-barrier-perspective/

#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu   #ANEandScience 

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#NotJustTheFlu – A Typical Account Of ANE and The Emergency Experience

18193999_10155292350358653_8866037061378516430_nMy 7 year old daughter was in hospital with ANE after suffering from influenza A. She had seemingly usual virus symptoms and was ill off school with it on Monday but by late afternoon her temperature quickly spiked and she was yelling out to me that her legs were hurting and told me to take her to the hospital. I thought she was over-reacting (as she often does about things) but took her to the emergency GP surgery, instead. She became lethargic in the waiting room and vomited on the floor there. And couldn’t stay awake throughout the Dr’s examination. Her temp was over 41 deg C and I was told it’s a virus, to take her home and give paracetamol and ibuprofen and if no improvement in a couple of hours, to take her to the hospital. After having the painkillers, she drifted off to sleep on the sofa and I waited for signs of improvement. Instead, she woke up confused and disorientated and hallucinating. Temperature still very high, I took her to the local hospital’s Accident & Emergency dept. She deteriorated quickly during the 4 hour wait to be seen by a Dr and it was only because she messed herself whilst waiting, but was too ill to even realise, that she was then seen. She drifted into unconsciousness almost the same time she was taken into a room for a Dr to examine her. Dr admitted her without delay because, besides everything else we had yet to have diagnosed, she was very dehydrated, with sunken eyes.
Drs all said she would wake up wanting her breakfast, the following morning, but I always had a feeling it wasn’t that straightforward. She was incontinent throughout the night, which began making Drs more concerned as to what might be wrong. She slept throughout, only to grizzle and moan, when they tried doing obs and wanted her to open her eyes to check her pupils. When they did manage to open her eyes the following day, to check, I noticed her left eye was turned totally inwards. I told the Drs and said that wasn’t normal; something was wrong. They said it might just be from where she’d slept so long as was tired. But I knew it wasn’t.
They then suggested a lumbar puncture, as they were initially checking for meningitis. But they cleared her of that. I can’t remember what the LB *did* show! Over the next few days (her still asleep and resisting them opening her eyes to check her pupils) she had an EEG and then an MRI. From the MRI they diagnosed encephalitis (after liasing with paediatric neurologists in **** hospital) and said they were waiting for a bed to become available at *******, as they had special care for her, there, not provided at the local hospital.
The following morning (5 or 6 days following initial hospital admission) she was transferred the 30 or so miles to ********’ Paediatric Intensive Care Unit, where her condition was changed to acute necrotising encephalitis. I can’t remember how long S**** slept for. It felt like eternity. Her vitals were always ok..though they had her on a barrage of treatment.. antivirals, Tamiflu, steroid, antibiotics, clonidine and chloral and she had an immunoglobulin transfusion. (May have been other drugs too during her time in PICU but it’s all a blur). When she did start to come round, she would thrash around in the bed so much, it made all of her skin very, very sore. They ordered in a special padded bed for her and a special circulating-air mattress, and even special silk sheets, to try and soothe her red and sometimes bleeding skin. S*** was always able to breathe without assistance and her obs were generally always good. Her temperature remained high and there was only one day I can remember, where I thought she was deteriorating and she needed an oxygen mask to be placed just beside her face on the pillow.

Read a full version of this recount at http://aneinternational.org/ane/sarah/

Many of ANE International’s members have very similar experiences on first presentation to Emergency Rooms. On International #ANEawarenessday we want to stop this from happening. Be aware of neurological symptoms in patients that present with viral symptoms. Vision issues are an early sign as is extreme lethargy, vomiting and incontinence.

 

#ANEandUs  #AwarenessDay #RareDisease #ANEawarenessday #Influenza #cytokinestorm #braininjury #AcuteNecrotizingEncephalopathy #ShareYourRare #patientstories #InfectionInducedAcuteEncephalopathy #ANEC  #rarespecialpowers #brain #influenza #flu  #vaccine #FacesOfANE #ANEandMe #FairForRare #NotJustTheFlu #UKStrong  

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