Thank you for joining us on the 3rd annual ANE Awareness Day. ANE stands for Acute Necrotizing Encephalopathy. We appreciate all the comments, and sharing that you have done throughout the day. Thank you for helping us create awareness about Acute Necrotizing Encephalopathy.
This disease is classified as a Rare Disease as a subcategory of Ultra Rare. ANE is underdiagnosed making Awareness Day a necessity. Since MRI is now commonly used as a diagnostic tool, the awareness of ANE is growing in the medical world. However the need to keep raising awareness is still very much needed.
ANE International believes that now is the time to act, to provide hope and share knowledge to the general public, medical communities and ANE families who are impacted by acute necrotizing encephalopathy, a rare disease.For many rare diseases, basic knowledge such as the cause of the disease,pathophysiology, natural course of the disease and epidemiological data is limited or not available. This significantly hampers the ability to both diagnose and treat these diseases. To address this challenge, public funding of fundamental research into the disease process remains necessary both at the national and global level. Rare disease patients are scattered across countries. As a result, medical expertise for each of these diseases is a scarce resource. Fragmented disease knowledge means that it is critical that investments in fundamental research go hand-in-hand with investments in dedicated infrastructure and international networks (biobanks, registries, networks of expertise). Where needed, these networks can also provide opportunities to train health professionals on rare diseases.
“It’s a bit more complicated than “ANE is caused by a mutation in a gene” or “it is caused by a virus” or “it is caused by environmental factors”. In reality it is a combination of all of these. Your genes encode proteins that make up your cells. These proteins have various functions including how your body reacts to viruses and the environment. Disentangling all of this is very complicated. In the lab we can see that cells cannot survive without a RanBP2 protein – so it is likely that ANE-associated mutations do not completely disable the gene but alter it in a very particular way so that the body’s reaction to certain viral infections is altered”.
ALEXANDER F. PALAZZO, ASSOCIATE PROFESSOR. TORONTO CANADA
Storytelling has been one of our most fundamental communication methods for thousands of years. A story has been proven to be more memorable than presenting just facts.That’s because evolution has wired our brains for storytelling. A story is a powerful, unifying tool that connects mankind, breaks down barriers, and heals wounds.
Our members share their stories as a way to bond over emotions, beliefs, remembrance of trauma and shared tribal knowledge on acute necrotizing encephalopathy. There’s no doubt about it: stories are powerful. When a person can identify their role in their own story as well as the individual elements of their story, they can then begin to understand their lives and the world they’re part of in a way most people never experience.
Raising awareness of Covid19 and adult cases of ANE.
You may be surprised to find out that there are a lot of medical articles on the subject of Acute Necrotizing Encephalopathy, to date, we’ve collected close to 200. However, even in 2020, so much is still unknown about Acute Necrotizing Encephalopathy. With cases of ANE and an association with Covid19, even more confusion has been added to the overall picture of the disease. Research into the pathogenesis of viral infection and ANE is still sorely needed. To date all published cases of Covid19/ANE that we have seen have been in the adult population.
Awareness Day 2020 – #ANEandUs
See the following published articles on Covid19 and ANE –
The world’s first published case report of Covid19 and ANE. A video explaining the case by the treating physician.
Jacob, a cheeky 3 year old from Norwich who had ANE at 19 months old.
Daniel, whose family had already experienced the loss of his sister to ANE before he was born, fights his own battle with ANE.
Silas and his family from Germany, they also feature in our story page with their own website.
Lucy, a little girl from Australia who is the inspiration for world first research.
Isaac and his beautiful family from Brazil.
Blake and Sophie in the UK who are both fighting significant disability in their journeys with ANE.
Kivvy and Elora two little girls who both stayed at the same hospital when they were fighting ANE.
We invite you to read these stories and get a closer look at the personal journeys of ANE in media articles. These can be found on the ANE International website at ANE in the Media – https://aneinternational.org/ane-in-the-media/
Forever in our hearts; all the warriors who have lost their battle with Acute Necrotizing Encephalopathy. When a loved one passes away, we keenly feel the need to express what they meant to us, ANE International honour’s their memory on this awareness day! FOREVER IN OUR HEARTS.
Parents of a six-year-old Calgary boy who spent months recovering in the Alberta Children’s Hospital from the flu and subsequent condition are hoping their story will motivate others to get vaccinated against influenza.
“This doesn’t just help you or your children, it helps my children, and it helps Daniel. It helps other kids who may potentially have a genetic disorder that could bring on an ANE episode for them,” Keith Audley, Daniel’s dad told CTV News.
Daniel came down with the flu in April 2019 and was rushed to the hospital when his condition deteriorated.
“He had vomited early and then he wasn’t standing up,” said Stacey Audley, Daniel’s mom.
The six-year-old had swelling in his brain stem and spent two weeks in the ICU, ten days of which were in a coma, according to Stacey.
“At that point, we were on minute to minute,” Keith said.
Daniel was diagnosed with a rare condition called acute necrotizing encephalopathy.
What is acute necrotizing encephalopathy?
Otherwise known as ANE, the disease is characterized ‘by brain injury that usually follows an acute, mostly viral infection,’ according to the group ANE International.
The condition can start with typical flu-like symptoms.
“Instead of the normal recovery where your child would start to get better or start to act themselves, they don’t. What happens is they become more sleepy or they may develop seizures or weakness on one side or the other,” Dr. Michael Esser, a pediatrician and researcher with the Cumming School of Medicine, told CTV News.
The Audleys were very familiar with ANE: daughter Rebecca had been diagnosed with ANE in 2002 at the age of two. She died within hours of being rushed to the hospital.
“At the time we when we lost Rebecca they told us it was a one in a million. This kind of thing never happens,” said Stacey Audley.
“It’s so rare that we aren’t able to give it an incidence number. In medicine we like to say how common something happens in a certain percentage of the population, say per 1000 or 100, 000 but it is so rare that at this point we aren’t able to give it a number,” said Esser.
More research is needed, but the Audleys say they’ve been told there is a genetic component as to why two of their children got ANE.
‘The way he bounced back is nothing short of miraculous to me’
Daniel is now back and home, after spending months in the hospital relearning how to walk, talk and eat.
“The way he bounced back is nothing short of miraculous to me,” Keith Audley said.
The six-year-old is also back in school, where the desks are wiped down during breaks and his classmates regularly use hand sanitizer.
It’s unclear if another ANE episode is in Daniel’s future.
“Unfortunately most kids don’t make it through their first episode,” said Stacey. “If they have another one, it’s usually not good,”
The family is grateful to the doctors, nurses and staff at the Alberta Children’s Hospital. Some of the healthcare professionals that treated Daniel also treated Rebecca in 2002.
Raising awareness of the various viral triggers of ANE. These include vaccine preventable diseases.
The viral triggers for ANE include influenza A and influenza B, novel influenza A (H1N1), parainfluenza, varicella (chicken pox), human herpesvirus 6 & herpesvirus 7 (HHV-6 and HHV-7), enterovirus, novel reovirus train, rotavirus, herpes simplex virus, rubella, coxsackie (hand, foot and mouth), and measles, among which the influenza virus and HHV-6 are most common. Covid19 is now also recognised as a viral trigger for ANE
ANE Awareness Day 2020 #ANEandUs.
In an effort to raise awareness for acute necrotizing encephalopathy, we’d encourage you to visit our website at : http://www.aneinternational.org
