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.
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.