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THE HERD January 2020~ 2nd edition

theherd - THE HERD January 2020~ 2nd edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis January 2020 2nd edition

In this Issue~

  • Announcements: February Autoimmune Encephalitis Awareness Month, Virtual Art Show, Follow IAES on Instagram
  • Most Popular Article of the Month: Bismark woman shares the journey of how an illness took her from lawyer to laureate
  • Most Popular Visual of the Month:  IV Solumedrol Treatment and what to expect
  • Most Shared Post:  What is AE? Free downloadable handout
  • Most Popular Video: What do you mean when you talk about ‘flooding?’
  • Clinician’s Corner: Treating MS with Rituximab may be safe during Pregnancy and Breastfeeding
  • Open Access:   Increased frequency  of anti-Ma2 encephalitis associated with immune checkpoint inhibitors

IAES is delighted to announce that we have established the month of February as Autoimmune Encephalitis Awareness Month. We will be holding our 2nd annual virtual art show and 4th annual awareness video starting the first of the month. Stay tuned for announcements of fun activities and additional information in the media during this special month where we shine a light on AE.

 

 

This February IAES is celebrating the 1st AE Awareness month! We are very excited about the surprises we have in store for all of you.

February 2020 is our 2nd annual Virtual Art Show. Anyone can submit art and your art can take any form. Photography, music, poems, a meme you create, paint, drawings, clay…the sky is the limit to how you want to express yourself and share with others about how AE has affected your life or simply share your personal expressions as someone touched by AE.

You can submit your art via our website or e-mail it to us. There is no limit to how many items you submit. The more the merrier.

Tell your friends and family to get creative. Let’s all shine a light on AE.

 

 

You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

Most Popular Article of the Month~

Bismark woman shares journey of how an illness took her from lawyer to laureate

 

Jackie Stebbins was a partner at a law firm in Bismarck and a successful trial attorney. She describes herself as a huge Elton John fan, even dedicating much the office space in her house to someone she draws inspiration from.

“I love that he talks so much about acceptance. You need to accept who you are. You need to accept people around you for who they are,” said Jackie.

That lesson of acceptance became even more important when Stebbins had to fight for her life. She thought it was the beginning of depression. Lawyers are 3.6 times more likely to suffer from depression according to a Johns Hopkins research study.

Her sleep was getting interrupted. Then it transformed to full-blown insomnia, before getting much worse.

 

Most Popular Visual of the Month~

IV Solumedrol Treatment and What to Expect

IAES encourages you to visit our AE Memes website page. You will find memes on the most common topics around AE.  IAES has developed ‘info memes’ using color, images and short pieces of information to support the AE Warrior’s deficits and provide a user-friendly way to learn about AE. 

Most Liked and Shared IAES Post

What is Autoimmune Encephalitis? Free Download Handout

What is Autoimmune Encephalitis?
Antibody-Mediated Autoimmune Encephalitis (Encephalopathy) is a rare disease that can be progressive or relapse-remitting. It is caused when the immune system makes auto-antibodies that are not supposed to be there. These auto-antibodies (aka antibodies) begin to attack healthy brain cells wrongly identifying those healthy brain cells as foreign. An autoimmune response is now occurring as the immune system attacks and destroys the brain’s healthy cells. Your own body’s immune system is attacking your brain. You are the victim of “Friendly fire”.
The antibody attacks by targeting special receptors in the brain that are on the cell surface, or exposed at the synapse of healthy nerve cells in the brain. Sometimes the antibody seeps inside the cell it is attacking. These antibodies bind to the healthy brain cell damaging or destroying them. Severe brain inflammation occurs. The brain now malfunctions. All brain functions can be compromised: emotions, psychosis, memory, cognition, problem-solving, speech, movement, seizures, balance, visual processing planning, sensory, hunger, thirst, behavior and personality traits, often followed by suppressed levels of consciousness and coma may occur.
AE is TREATABLE. Recovery is possible but most face years of treatment and rehabilitation. Many are left with various levels of brain injury.

 

Most Popular Video of the Month

What Does it Mean When we Talk about Flooding?

What do we mean when we talk about ‘flooding’? This video explains it. It is a typical symptom of people with AE or any disease that involves brain injury experience. You will find this video on the ‘Living with AE’ page of our website along with other videos on topics/symptoms we all experience such as overstimulation, Neuro fatigue, memory loss and more. It’s a great way to learn and to understand what the person with AE is going through.

Clinician’s Corner

Treating MS with Rituximab May be safe during Pregnancy and Breastfeeding

For moms to be – written on basis of couple of cases of MS – but could be of interest as an faq – Rituximab in pregnancy.

 

 

 

Increased Frequency of anti-Ma2 encephalitis associated with immune checkpoints inhibitors

 

Autoimmune encephalitis with negative paraneoplastic, infectious and serology markers poses a considerable diagnostic and therapeutic challenge. We described a case with neuropsychiatric presentation of seronegative autoimmune encephalitis. Paraneoplastic, infectious and metabolic etiologies were excluded. The patient responded to immuno therapy and achieved full remission.

 

 

 

 

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

 

Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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