Author: aneawareness

International #ANEawareness Day 31st July 2018 Join Us and help us to Raise Awareness of Acute Necrotizing Encephalopathy ANE International believes that raising awareness of Acute Necrotizing Encephalopathy will save lives. With initial symptoms being typical of viral illness and many cases being from influenza, many ANE patients are initially turned away from hospital emergency rooms. In most cases the patient is already showing unusual symptoms which are overlooked. These may include double vision, unsteadiness of gait, vomiting and extreme lethargy, some are already having seizures which if initially brought under control are put down to febrile seizures. Some patients are diagnosed with Encephalitis or Meningitis if the symmetrical brain lesions are not recognised. No genetic testing is done and this puts the patient and their family at risk of further attacks. Our aim is for all Doctors to look a little deeper for neurological symptoms with a viral illness and be able to recognise the lesions specific to ANE on MRI. That parents are aware of neurological symptoms and when to take action. Not only may this save the patients life but also other members in the family if ANE is genetic. Early treatment is crucial in slowing brain inflammation and hence damage. Take Action on the 31st By :- Sharing our Awareness Day Flyers & posts on Social Media Follow Us on: Twitter@aneinternationa FaceBook https://www.facebook.com/ANEInternational/ Instagram aneinternational Using our Profile Picture Frame see – https://www.facebook.com/ANEInternational/ (pinned post) or edit Profile Pic/add frame View our Website, read our stories and become familiar with ANE ***AVAILABLE NOW*** ANE Awareness Day MERCHANDISE https://teechip.com/aneawarenss Fast Facts *ANE can be both genetic and non genetic. Genetic cases are susceptible to recurrence. *It is a severe & rapidly progressive acute disease. *ANE is typically triggered by virus most commonly influenza. Other viruses include HSV6, varicella, rubella, measles, rotavirus, enterovirus and coxsackie 9. ANE on the rare occasion can be triggered by bacteria. *It particularly affects previously well children. *Typical viral symptoms (fever cough etc) rapidly progress to neurological signs including seizure & coma. *Bi Lateral thalamic lesions are a distinctive feature on MRI *Outcomes can include severe cognitive dysfunction, cerebral palsy, vision and speech issues. *Mortality is high and almost all survivors are left with Acquired Brain Injury *The exact pathogenesis is unknown. *It is a highly under recognised Rare disease that is often misdiagnosed.

Forever in our Hearts

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.

In Memory – Forever in our Hearts

Acute Necrotizing Encephalopathy

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.

ANE Awareness Day 2021 – #ANEandUs

Forever in our Hearts

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.

In Memory – Forever in our Hearts

Acute Necrotizing Encephalopathy

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.

ANE Awareness Day 2021 – #ANEandUs

How is the pandemic affecting you?

How is the pandemic affecting you?

  • Our ANE families will be focusing really hard on not being affected by their PTSD relative to viral infections
  • Our ANE families will feel all the uncertainties regarding the affected individual and the possibility of being affected by COVID.
  • Our ANE families will spend days, weeks and months researching and debating whether vaccinations is safe for their family
  • Our ANE warrior will feel the changes in their routine gravely and it will be disruptive for the entire family
  • Siblings of ANE affected individual will suffer and struggle with the restrictions.
  • Necessary therapy and surgery will be delayed

Forever in our Hearts

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.

In Memory – Forever in our Hearts

Rare Disease Day

Thank you for joining us on this Rare Disease Day!
A rare disease(also known as an “orphan disease”) is an illness that affects a small percentage of the population, thereby limiting scientific research, clinical expertise, and patient access to effective treatment options.
Every country has a different number to qualify as a rare disease but the challenges to Rare Disease are the same.

Acute Necrotizing Encephalopathy is actually an ultra-rare disease, there no official number of individuals affected by ANE.

Merci de nous rejoindre en cette journée des maladies rares !

Une maladie rare (également appelée « maladie orpheline ») est une maladie qui affecte un petit pourcentage de la population, limitant ainsi la recherche scientifique, l’expertise clinique et l’accès des patients à des options de traitement efficaces.
Chaque pays a un chiffre différent pour être qualifié de maladie rare, mais les défis posés aux maladies rares sont les mêmes.
L’encéphalopathie nécrosante aiguë est en fait une maladie ultra rare, il n’y a pas de nombre officiel d’individus atteints d’ENA.  Sur l’affiche : les maladies rares affect toute la famille et non seulement l’individu. Les parents peuvent souffrir d’anxiété, dépression, ESPT, et de super vigilance pour en nommer quelques-uns.

Rare Disease Day

Thank you for joining us on this Rare Disease Day!
A rare disease(also known as an “orphan disease”) is an illness that affects a small percentage of the population, thereby limiting scientific research, clinical expertise, and patient access to effective treatment options.
Every country has a different number to qualify as a rare disease but the challenges to Rare Disease are the same.

Acute Necrotizing Encephalopathy is actually an ultra-rare disease, there no official number of individuals affected by ANE.

*****


Merci de nous rejoindre en cette journée des maladies rares !

Une maladie rare (également appelée « maladie orpheline ») est une maladie qui affecte un petit pourcentage de la population, limitant ainsi la recherche scientifique, l’expertise clinique et l’accès des patients à des options de traitement efficaces.
Chaque pays a un chiffre différent pour être qualifié de maladie rare, mais les défis posés aux maladies rares sont les mêmes.
L’encéphalopathie nécrosante aiguë est en fait une maladie ultra rare, il n’y a pas de nombre officiel d’individus atteints d’ENA. Sur l’affiche: Les familles avec des maladies rares ont besoin de communauté dirigé par d’autres familles pour les aider à retrouver des réponses et pour un support émotionnel..

Rare Disease Day

Thank you for joining us on this Rare Disease Day!
A rare disease(also known as an “orphan disease”) is an illness that affects a small percentage of the population, thereby limiting scientific research, clinical expertise, and patient access to effective treatment options.
Every country has a different number to qualify as a rare disease but the challenges to Rare Disease are the same.

Acute Necrotizing Encephalopathy is actually an ultra-rare disease, there no official number of individuals affected by ANE.

Merci de nous rejoindre en cette journée des maladies rares !

Une maladie rare (également appelée « maladie orpheline ») est une maladie qui affecte un petit pourcentage de la population, limitant ainsi la recherche scientifique, l’expertise clinique et l’accès des patients à des options de traitement efficaces.
Chaque pays a un chiffre différent pour être qualifié de maladie rare, mais les défis posés aux maladies rares sont les mêmes.
L’encéphalopathie nécrosante aiguë est en fait une maladie ultra rare, il n’y a pas de nombre officiel d’individus atteints d’ENA.