On Saturday March 2 the AE Alliance hosted their annual Florence Forth Race. Around 1,000 runners and walkers participated and the weather was just perfect for a run. We are thankful to everyone that supported this great community event; the participants, the 100+ volunteers who made it all possible, those who supported us financially (raising …
It was September 4th, 2018, 18 days before I was getting married. I received a phone call from one of my mom’s co-workers. Apparently, my mom didn’t come in to work that day and didn’t call in sick either. They got my number from her emergency contacts. They told me that she had been a …
Boston Children’s Hospital would like your help in improving the care of children with Autoimmune Encephalitis. Boston Children’s Hospital is conducting a research study to explore whether parents are using social media to learn about their child’s health condition, and how this may affect their child’s medical care. They are inviting you to complete a …
On #RareDiseaseDay Charity shares her journey with Autoimmune Encephalitis: March 2018 was like every other year, I was preparing to do my spring cleaning. My husband Patrick and I, had our birthday celebrations and all our visitors had left to go home. I woke up and thought that it was a great day to start cleaning so I got out my cleaning supply bucket and cleaning supplies, recruited …
With Rare Disease Day coming up tomorrow, it is important to remember all the ways the medical field can help those who are suffering from rare illnesses. The collection and sharing of data, along with new advancements in technology are helping to break through barriers of rare diseases. Better patient care is ultimately a must, …
I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide. The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect about 0.83 people in a million. With Autoimmune Encephalitis the body starts …
I am an autoimmune neurologist at the Icahn School of Medicine at Mount Sinai in New York City who cares for children and adults with encephalitis. My interest in this field stems from the first patient I saw on my first day of neurology training. He was a three-year-old boy who presented with changes in …
For World Encephalitis Day 2019, Dr. Irani talks about his work and research and how he sees the field of AE evolving. Dr. Sarosh Irani is an Associate Professor, Honorary Consultant Neurologist and Wellcome Trust Intermediate Fellow with clinical and laboratory interests in the field of autoantibody-mediated diseases of the central nervous system. He sees …
It was almost exactly ten years ago that I rushed home from a coffee shop, paranoid and terrified, and my journey with autoimmune encephalitis began. A college sophomore, I ended up in the ER and then a psychiatric ward, eventually “diagnosed” with Psychosis: Unknown. There have been a lot of unknowns along the way. My …
For World Encephalitis Day 2019, Dr. Muscal talks about his work and research and how he sees the field of AE evolving. Dr. Eyal Muscal is a pediatric rheumatologist at Texas Children’s Hospital with a MS Degree in Clinical Research whose activities include patient care, fellowship education, quality improvement, and clinical research. He is the Childhood …
