Let this sink in.
ACUTE NECROTIZING ENCEPHALOPATHY
This is what our beautiful boy, Bohdi, had. This horrible and extremely rare brain disese that is impossible to find until it’s too late when symptoms show. This world is so incredibly unaware of this disease, most doctors don’t even know what it is. Bodhi was the 53rd case reported world wide that they could find, but their could be others.
We would like to spread awareness about this disease because it’s so important. So please, share. Learn. Talk to others about it.
Get this disease known!
Acute necrotizing encephalopathy type 1, also known as susceptibility to infection-induced acute encephalopathy 3 or IIAE3, is a rare type of brain disease (encephalopathy) that occurs following a viral infection such as the flu.
Acute necrotizing encephalopathy type 1 typically appears in infancy or early childhood, although some people do not develop the condition until adolescence or adulthood. People with this condition usually show typical symptoms of an infection, such as fever, cough, congestion, vomiting, and diarrhea, for a few days. Following these flu-like symptoms, affected individuals develop neurological problems, such as seizures, hallucinations, difficulty coordinating movements (ataxia), or abnormal muscle tone. Eventually, most affected individuals go into a coma, which usually lasts for a number of weeks. The condition is described as “acute” because the episodes of illness are time-limited.
Approximately one-third of individuals with acute necrotizing encephalopathy type 1 do not survive their illness and subsequent neurological decline. Of those who do survive, about half have permanent brain damage due to tissue necrosis, resulting in impairments in walking, speech, and other basic functions. Over time, many of these skills may be regained, but the loss of brain tissue is permanent. Other individuals who survive their illness appear to recover completely.
It is estimated that half of individuals with acute necrotizing encephalopathy type 1 are susceptible to recurrent episodes and will have another infection that results in neurological decline; some people may have numerous episodes throughout their lives. Neurological function worsens following each episode as more brain tissue is damaged.
We love you so much Bohdster, and every day hurts so bad without you here by our side.
Disclaimer: The information in this website is intended as a general information/ discussion guideline only.It should never be construed as medical advice.For further information contact your local health care provider.If you have any questions regarding health concerns, seek medical assistance from a qualified health professional. ANE International Incorporated – No. 2673652 (New Zealand).