You’ve likely found this blog because you, or your child have just been given a diagnosis of Autoimmune Encephalitis. Welcome! I’m glad you found us, although I wish it were on different terms. Autoimmune Encephalitis- what in the world is that?!? If you are anything like my husband and I, you did exactly what we did a year ago: searched the internet for every resource and every bit of information that you could find. If you found the same things we did, you were bombarded with medical journals and articles filled with medical jargon that was both confusing, and scary. I remember reading article after article about tumors, brain swelling, “unknown prognosis.” I was scared, sad, and anxious.
As my daughter progressed in both disease and treatment, I began to read everything I could find about Autoimmune Encephalitis. I quickly learned that I needed to become an “expert,” of sorts in order to advocate for my daughter. See, AE is a rare disease, but only because it’s unheard of, and misdiagnosed quite frequently due to the way the disease presents. This means that every medical provider I have come in contact with in the last year has never heard of it. I believe that everything happens for a reason, and even if I don’t understand why something like AE would come in and disrupt our lives, I knew that Maddi’s suffering, our family’s suffering, was for a greater reason. I started this blog to help raise awareness for Autoimmune Encephalitis, and more so for people who go looking for information at initial diagnosis to have a place to get information that they can understand, and some direction.
So again, welcome to our blog. Here you’ll find an explicit account of Maddi’s disease onset, diagnosis, and treatment over the last 12 months. You will find external resources, as well as caregiver support. Please feel free to email me at firstname.lastname@example.org to ask specific questions. To start, here are some things you can do to gain support and knowledge about AE during your journey.
- Follow MaddibeatsAE on facebook. Make sure to hit “follow” to get updates directly in your feed. I post there almost daily, and share lots of AE information.
- Request to join the International Autoimmune Encephalitis Society here. This group is CRUCIAL! Make sure to check your “other messages” box, as someone from the group will message you before approving your membership. This group has been the best support system I have found. Volunteers who run this group have access to peer reviewed, verified medical data. They have access to a list of AE experts, and provide a variety of patient advocacy. Be careful joining other AE groups, as the information given can be confusing and not always backed by medical data.
- Check out their non-facebook page here. Please note, the IAES is a non-profit organization.
- Get connected with the Autoimmune Encephalitis Alliance here. They are a great organization in Durham, NC. Their website is filled with sound medical advice, AE data, and real stories about actual patients. Each year The AEA host the Florence 5k, which is a charity 5k to raise money and awareness for Autoimmune Encephalitis. It is a great event that I would recommend for all AE families, as it’s a great opportunity to meet other AE families from across the country.
- Breathe. Right now, you’re probably overwhelmed. This is an overwhelming diagnosis. The road is likely to be long and hard, and if you’re a parent with a child with AE- heartbreaking. Be kind to yourself starting now. Make sure you have a great support system in place. Pack a good hospital bag. Splurge on chocolate. Wear those stretchy yoga pants all day. You’ve got this. You’re not alone.