Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
– Now Available on Amazon
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#Dazzle4Rare August 13th – 20th | Campaign Details and News

With only hours left until we officially start to #dazzle4rare across social media platforms, we wanted to take a moment to break down some ways you can join HESA, Mark2Cure, Spinal CSF Leaks Foundation, Glitter Queens Global, PTEN Hartoma Tumor Foundation, and more!

  1. Visit our DayCause page and sign up using Facebook or Twitter
  2. Join the #Dazzle4Rare event page to stay up-to-date on approved social media messages you can share
  3. If you use a tool such as HootSuite or Buffer to schedule your social media posts, start scheduling these posts now
  4. Follow the #Dazzle4Rare hashtag on Twitter, Facebook, Instagram, and other social media platforms for social posts you can like and reshare

We also have some videos on the HESA Facebook fan page to show you how to use tools like HootSuite to schedule tweets or how to sign up for the DayCause campaign.

 

 

Second Annual #Dazzle4Rare and First #HEAwareness Day

During the week of August 13th through the 20th, HESA is going to #Dazzle4Rare – AGAIN. We encourage all our social media followers and our #HEFamily to post, like, share, and otherwise spread awareness for rare disease. Again this year, we will be compiling a list of other communities who wish to participate and who will be providing information which you can share across social media platforms during the aforementioned week.

Why did we start this campaign last year?

It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.

For those wondering, why are we doing this, the answer is simple.

With 10% of the population living with rare disease and potentially 7,000 rare diseases out there, it’s so hard for all of us to reach the 90% who do not live with a rare disease and especially the condition(s) we have. If we band together and show the world we are here and have a voice while sharing each other’s stories, we have an opportunity to raise a greater awareness. What do we have to lose by creating a wider, more inclusive  community for one week and spread awareness together and for each other?

We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

What’s not to love about that?

How Can You Get Involved?

If you would like to participate, it’s simple! You can like, share, and retweet any of the posts on our social media pages or those of our partners, Glitter Queens GlobalGYNCSM, and Mark2Cure. We also encourage you to share information about rare disease, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare.

Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.

And if this was not enough, we also joined The Cambria Lord Foundation this year in their #wear4rare365 campaign. Our #wear4rare365 awareness day is August 18th, 2017. We encourage all our #HEFamily to wear their #HEAwareness t-shirts on this special day and share across social media to show that we are here and we are survivors!

If you have any questions, please don’t hesitate to contact us via our Facebook page, HESA – Hashimoto’s Encephalopathy SREAT Alliance. Alternatively, you can use your online contact form here.

Join us in saying, “I shine a dazzling light, showing others what is possible through advocacy and education. Please join me on social media the week of August 13th – 20th 2017 using the hashtag #dazzle4rare.

List of News Sites – HESA Publishes Follow-up to Groundbreaking First Book

We are so pleased that our new book is not only out but we are anticipating the upcoming release of the Kindle e-reader version. Both will be available on Amazon for purchase.

For now, we’re excited to share the list of national and local news publications on which our press release is currently appearing. If you see your local news affiliate or website on this list, please follow the link and request they follow-up this story in your area!

Release headline: HESA Publishes Follow-up to Groundbreaking First Book

Release date: May 05, 2017

24-7 Press Release (Google Authorship URL)
http://www.24-7pressrelease.com/press-release/hesa-publishes-followup-to-groundbreaking-first-book-437990.php
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"Understanding Hashimoto's Encephalopthy"You can find the press release here [http://www.24-7pressrelease.com/press-release/hesa-publishes-followup-to-groundbreaking-first-book-437990.php].

Posted by HESA – Hashimoto's Encephalopathy SREAT Alliance on Friday, May 5, 2017

Press Release: HESA Publishes Follow-up to Groundbreaking First Book

WOODSTOCK, IL, May 05, 2017 /24-7PressRelease/ — The Hashimoto’s Encephalopathy SREAT Alliance proudly announces the highly anticipated Understanding Hashimoto’s Encephalopathy 2016 Edition: An Expanded and Updated Guide For Patients, Families, and Caregivers.” This new and expanded second edition includes interviews with the top neurologists in autoimmune neurology from around the world. This edition also brings to light the daily struggles of patients stricken with “Hashimoto’s encephalopathy” (also known as Steroid-Responsive Encephalopathy Associated with Thyroiditis).

The book features a foreword written by Dr. Sarosh R. Irani, the world-renowned consultant neurologist, and clinician-scientist, specializing in autoantibody-mediated diseases of the central nervous system. Dr. Irani has said of the book, “Understanding Hashimoto’s Encephalopathy draws on the experiences and knowledge of patients diagnosed with HE, as well as insights from caregivers and clinicians. It offers guidance for future and current HE sufferers who are coming to terms with their illnesses. This balanced and extensive text was written with great care, as a resource guide for this heterogeneous condition.”

The book also prominently features interviews with twelve clinicians who work directly with patients affected by autoimmune encephalitis and the resulting neurological deficits presented by the condition. In addition to the invaluable insights of these clinicians, the follow-up book continues to focus on patient, family, and caregiver narratives which remain the core of the book. The book is rounded out with additional text describing the condition, a chapter offering support for those who have received a diagnosis of Hashimoto’s encephalopathy/SREAT and providing suggestions for how to move forward, and finally, a robust resource section with an extensive glossary.

“Understanding Hashimoto’s Encephalopathy 2016 Edition: An Expanded and Updated Guide For Patients, Families, and Caregivers” is currently available in softcover and will be released in the Kindle digital book format in May of 2017.

To learn more about this serious condition, you can follow Hashimoto’s Encephalopathy SREAT Alliance on the following social media platforms: Facebook, Twitter, Instagram, LinkedIn, and Pinterest.

Riley’s HE Story [Video and Text]

Riley wrote, in her own words, her experience with Hashimoto’s encephalopathy. She and her mother contributed the below story to the 2017 #Wear4Rare365 campaign. We are republishing here with their permission.

You can see Riley’s video about her HE experience and read her own words below.

 

 

 

 

My name is Riley, I am 12 years old, I live in McKinney Texas, and this is my HE story.

I woke up on April 7, 2016 a different person. All the sudden I had unexplained symptoms that continued to rapidly get worse over the course of six months. Before April 7 I was a very confident, motivated, brave, and outgoing person. Not much phased me, made me nervous, and I was a very healthy and active person! Now I was having unexplained panic attacks, stroke like symptoms in my face, irrational phobias that I couldn’t explain, moments of OCD, muscle spasms or ticks, memory loss (several times forgetting who my family members were), hearing voices, complete lack of concentration or motivation, blacking out, hallucinations, and sometimes I went back to being in a two-year-old state where I acted and spoke like I was two again.

These symptoms confused everyone, and as you can imagine, they resulted in many visits to the ER, doctor’s clinics, and a lot of tests!  It was very difficult to finish the school year but with a very supportive school and teachers I managed to finish the year without having to withdraw. Because my initial CT scan and EEG came back normal every doctor, psychologist, ER doctor, nurse, psychiatrist, or professional that I saw didn’t have any idea as to what I might be suffering with. They all had a different diagnosis and all they could do was offer a different medication to try and help suppress these unexplained symptoms. Luckily, my parents kept pushing for answers as to why I just suddenly woke up a totally different person one day. This leads us to the man who saved my life, my neurologist. He knew to test for a few different rare things and so he sent us to an ER to run those tests. However, when we got there, the ER doctor told us that we “didn’t need to run these tests because there was no way I had what this test is testing for…” and “your Neurologist is just covering his own butt” and “the test could hurt, cause an infection, and we should just go home.” Trusting this doctor’s persuasive argument, we left that day even more discouraged than ever. To this day we all wish that that doctor would have known more about my disease, listened to my neurologist who wanted the test done, or that she had access to ER Rare Disease Protocol information. The actions of this ER doctor convincing us to leave without that testing was a break within my journey because the following months were very difficult.  I started to get sicker, my symptoms got worse, more dangerous, and we were all very scared. I had a lot of people praying for me and at this point in my journey I tried to figure out what life was going to look like now that I had these mysterious attacks and challenges. They changed who I was, how I acted, what I could do, and I didn’t like that. I would always smile and I was thankful for the moments where I felt like myself briefly and could enjoy myself.

Then one day, about two months later, my mom had a bad feeling about leaving the ER that day without performing those tests. So, she picked me up from school and we drove to have them done right away. Three days later my neurologist called us and gave us the news we will never forget. We finally had a name to what was slowly taking over my life, a diagnosis! Something to call this! Hashimoto’s Encephalopathy, a steroid responsive autoimmune disease that very few people have.

We immediately started oral steroids and within 48 hours, 99% of my symptoms had vanished and I felt like myself again for the first time in six months! Our prayers had been answered and we finally had taken a step in the right direction. However, sadly, as soon as the steroids ended, my symptoms returned almost immediately. We did this treatment a few times and had the same results each time. My neurologist then told us about a treatment called IVIG. We scheduled this treatment in mid-October and I received five days’ worth. Four weeks after is when I first noticed that I was feeling like myself again! It was amazing! I had zero symptoms, my motivation and determination returned, and I was back to enjoying school, my friends, and all my hobbies that I used to enjoy. 100% Riley! Our family and all my friends who had been praying for me had a big celebration and there were a lot of happy tears!

It has been almost 4 months since my treatment and I’m proud to say that I’ve been in remission the whole time. I am so thankful for the people who donated blood for me to receive my IVIG because it has saved my life. I have hope that my remission will last a very long time, but I know that if I need it, that treatment is always available to me again. As for right now, I love going to school, where I’m active in theater, I look forward to my youth group every week, and my family and I are closer than ever having gone through this season of life together. I couldn’t have done it without the amazing people around me who love me. I hope and pray that enough research will be done about HE and SREAT so that in the future it is diagnosed earlier and recognized by doctor’s so that the experience isn’t as frightening and unsure as mine was for so long.

HESA Helps Promote Encephalitis Research with Funding Pledge to AE Alliance

Chicago, IL, February 6th, 2017:  The Hashimoto’s Encephalopathy SREAT Alliance (HESA) is a 501 (c) (3) non-profit organization, started in 2012 by co-founders, Nicola Nelson and Susan Foley. After both women were affected by the condition commonly known as Hashimoto’s encephalopathy, the women embarked on a mission to collect, archive, and share information on the condition, and offer emotional support to patients, families, and caregivers. This mission was furthered by the publication of the book published in 2013, “Understanding Hashimoto’s Encephalopathy: A Guide for Patients, Families, and Caregivers”, (available on Amazon.com).

 

HESA could not be more proud to contribute a portion of our donations and proceeds from both of our books to help further research into autoimmune encephalitis, and by proxy, Hashimoto’s encephalopathy, through AE Alliance,” said Executive Director, Susan Foley.

 

The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and lessen the suffering of patients and their families,” said John Spencer, Executive Director of the AE Alliance.

The Autoimmune Encephalitis Alliance improves the lives of patients with autoimmune encephalitis by promoting collaboration in clinical and basic research and by creating a community of patients, families, and caregivers so that no one faces autoimmune encephalitis alone.

The AE Alliance strives to find a cure for autoimmune encephalitis through multi-disciplinary, collaborative research, and clinical care. The AE Alliance is a 501(c)(3) non-profit and all services are free of charge. For more information visit www.aealliance.org.

To learn more about the Hashimoto’s Encephalopathy SREAT Alliance and mission, please visit http://hesaonline.org.

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Find Our Page On The Mighty

More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

 

AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.