Post Archives
Visitor Survey
Visitor Survey
Advocate
- Patient Advocate, Beverly Seminara Help FAQ and advocacy website by Beverly Seminara
Case Studies
- Hashimoto's Encephalopathy – A Complete List of Published Case Studies This page may no longer be updated. Review at your own discretion.
- HE Notebook A research site and blog specifically dedicated to Hashimoto’s Encephalopathy.
- Neurology.org Neurology – The most widely read and highly cited peer-reviewed neurology journal
Hashitmoto's Encephalopathy Support
- Children with hashimoto's Encephalopathy For parents, guardians, care-givers, and children with Hashimoto’s Encephalopathy.
- Children with Hashimoto's Encephalopathy Health/Wellness Website Another H.E./SREAT group geared toward parents, guardians, caregivers, and children with the disease.
- For Those Diagnosed with Hashimotos Encephalopathy / SREAT For those diagnosed with H.E./SREAT.
- Hashimoto's Encephalopathy Group Description – “You can post anything to do with this disorder.”
- HELPS Hashimotos Encephalopathy Group
- supporting those with hashimoto's encephalopathy Community Group Description: “H.E is a disorder NOT a disease! It is not cureable and not many people understand it. We are here for you so don’t suffer in silence.”
- The Understanding Hashimoto's Encephalopathy – Support Forum The support forum associated with the book “Understanding Hashimoto’s Encephalopathy”
Humour
- Laugh Out Lyme “Sometimes laughing is the last thing you want to do when you deal with chronic illness, but once you let out a little giggle and then a couple more, you can’t help but feel uplifted, even if only for a second.” -Mary Sira
Support & Education
- American Brain Foundation
- Aphasia Hope Aphasia is a speech/language disorder that impairs a person’s ability to communicate. It is most commonly the result of a stroke but can occur from any severe head injury.
- Auto-Immune Encephalitis Alliance Promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.
- Autoimmune Walk Walks to raise money for auto-immune disease awareness
- Care to the People Care To The People™ is a for-purpose, social media health initiative that’s making the web a better place for anyone coping with a health issue, their loved ones, and patients seeking advice, inspiration, and encouragement from others.
- Encephalitis Society
- HESA Hashimoto’s Encephalopathy SREAT Alliance
- HESA – Hashimoto's Encephalopathy SREAT Alliance Non-Profit Organization Information about H.E./SREAT and resources.
- IG Living Our mission is to support the IG community through education, communication and advocacy.
- Invisible Illness Week September 28th – October 4th Invisible Illness Awareness Week
- Mark2Cure Project Push research forward and discover cures faster.
- Neurology Now Neurological jounal
- Rare Disease Day Rare Disease Day
NINDS
Link: NINDS Encephalopathy Information Page
What is Encephalopathy?
Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure. Encephalopathy may be caused by infectious agent (bacteria, virus, or prion), metabolic or mitochondrial dysfunction, brain tumor or increased pressure in the skull, prolonged exposure to toxic elements (including solvents, drugs, radiation, paints, industrial chemicals, and certain metals), chronic progressive trauma, poor nutrition, or lack of oxygen or blood flow to the brain. The hallmark of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak. Blood tests, spinal fluid examination, imaging studies, electroencephalograms, and similar diagnostic studies may be used to differentiate the various causes of encephalopathy.
The full infomation page can be found at http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm.
This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.