Let’s not sugarcoat it: autoimmune encephalitis (AE) is a devastating disease to live with. There are soul-crushing lows that push both patients and caregivers to their emotional limits, leaving little unscathed in the life you once knew.
But there’s a spark of light to be found amongst the rubble: the path is no longer as lonely as it once was. There’s a small but growing contingent of us who are vocal online and offline in our efforts to raise awareness of this disease and provide support to one another. While much work remains to improve diagnosis timelines, treatment options, and long-term outcomes, there is hope to be found in the increased quantity and quality of AE conversations that are occurring in the world today—between medical professionals, yes; but more excitingly, between everyday people like you and me.
How I Solved My Medical Mystery
I can confidently say that I would still be in the throes of encephalitis-induced despair were it not for my willingness to find and join communities dedicated to this illness. My symptoms were a mystery for 5 years, unsolved by the scores of medical professionals I visited in Canada and the United States. Talking to others with similar complaints changed that; I learned so much more from speaking to fellow patients and caregivers than I did from any physician or Google search. Ultimately, it was a few key online conversations that enabled me to solve the puzzle and track down the doctor who would bring me back from the brink.
The unfortunate reality is that the latest breakthroughs have yet to be widely disseminated, many nuggets of informational gold lack formal publication, and the field is too young for the average doctor to speak knowledgeably to what AE even is. The good news is that support groups now exist, serving as a powerful countermeasure against falling through the cracks of the medical system.
How I’m Coping in the Aftermath of an Autoimmune Encephalitis Diagnosis
I thought I was on my merry way after my first few rounds of Rituximab brought all my symptoms to remission.
In fact, I would end up joining the tens of thousands whose lives continue to be marred by AE long after diagnosis.
When I found myself relapsing this past March, patient/caregiver groups are the first place I turned to for guidance. Again, they proved invaluable: I was able to find a recommendation for a new AE doctor, which came as a significant victory amidst a backdrop of medical trauma. It can be horrendously difficult to find a doctor that will appropriately manage the complexities of encephalitis, especially on short notice in a new city.
As I type here recovering (again) today, I am filled with gratitude thinking of all the supportive individuals I’ve met on this journey. Together we’re riding out the emotional turbulence of AE, illuminating the dark with a common path of care and encouragement. It is within this light that I’ve found significant emotional healing, and the hope for a better tomorrow.
Where Patients and Caregivers Can Find Support for Autoimmune Encephalitis
The lists below encompass a variety of resources I’ve used in my journey to better health. If there’s one I’ve missed, please let me know in the comments.
Note that many run in-person and virtual support meetings. You may need to phone or send a message to the organization to find out more.
- Autoimmune Encephalitis Alliance (based out of North Carolina, USA)
- Encephalitis Society (based out of the UK)
- International Autoimmune Encephalitis Society (based out of the USA)
- Encephalitis 411 (based out of Plano, Texas, USA)
- HESA: Hashimoto’s Encephalopathy/SREAT and Seronegative Autoimmune Encephalitis Alliance (based out of the USA)
- Anti-NMDA Receptor Encephalitis Foundation (based out of Ottawa, Ontario, Canada)
- Neuroimmune Foundation (based out of the USA)
- PANDAS Network (based out of the USA)
- ASPIRE: The Alliance to Solve PANS and Immune Related Encephalopathies (based out of the USA)
- PANDAS Physicians Network (based out of the USA)
- Inflamed Brain Alliance (based out of Canada)
Note that the most active communities are on Facebook. By far, Facebook Groups have been the most helpful to me for finding information and support that has aided my diagnosis, treatment, and recovery. Most groups allow membership even if you only have a presumptive diagnosis or lack an antibody, but this is up the discretion of the volunteers that manage the group.
A word of caution: be aware that the flavour of each group differs depending on factors such as the beliefs, values, and management style of the moderators. Some are a completely open forum, while others contain curated responses that align with the slant of the moderators. It can be hard to tell which is which until you spend some time within that particular community and start to interact with its members. Just remember to be discerning and cross-reference what you read with other resources. If you have a poor experience in one group, I encourage you not to be deterred and instead move on to a different group.
- Autoimmune Encephalitis Support Group
- International Autoimmune Encephalitis Society
- NMDA Antibodies Support Group
- Encephalitis Global
- Survivors Plus (Encephalitis Survivors and Caregivers)
- The Understanding Hashimoto’s Encephalopathy & Seronegative AE Support Forum
- For Those Diagnosed with Hashimotos Encephalopathy/SREAT or Seronegative AE
- Anti-NMDA R Encephalitis in Canada/Encéphalite Anti-NMDA au Canada
- Antibody-Negative Autoimmune Encephalitis
- Rituxan (Rituximab) Users and Support
- Encephalitis Recovery (Survivors and Caregivers)
- Autoimmune/NMDA Encephalitis (Private)
- Neuroimmune Foundation: PANS Parents/Neuroimmune Families Group
- ASPIRE PANS/PANDAS GROUP
- PANDAS/PANS Poppies (Some sort of Encephalitis of the Basal Ganglia)
- PANDAS/PANS Autoimmune Encephalitis Recovery
- Autoimmune Encephalitis Alliance at SmartPatients.com
- Encephalitis Society at HealthUnlocked.com
- Encephaltis Global at Inspire.com
- /r/Encephalitis Reddit
I’ll leave you with this: the better your support system, the better equipped you’ll be to beat autoimmune encephalitis. This statement applies to both patients and caregivers. If you’re struggling at any point in your autoimmune encephalitis journey, please know that you’re not alone—do yourself a favour and get involved with the communities above.