AutoimmuneDx is one year old today.
For me, this newsletter has been better than cake, ice cream, and presents, combined.
Thank You!
I cannot say thank you enough for reading. When I published my welcome post one year ago today, I wasn’t sure that anyone would want to tackle such a dense subject with me, but I’m so glad you’re here, and that you do. Thank you for your comments and your emails—they’ve given this work direction and purpose.
Thank you to Dr. Juan Manuel Anaya, whose meticulous (and very readable!) work on polyautoimmunity, over many years, has shaped so much of my thinking on autoimmune disease.
Midnight PubMed Odysseys
Before I started AutoimmuneDx, I spent three years down the rabbit hole of scientific studies in an effort to help my family members ask the right questions to get diagnostic and treatment answers. What I learned is what autoimmune disease researchers have struggled with for a long time—the attempt to impose order and clarity on the chaos of autoimmune disease diagnoses, without the benefit of much research funding. So, to try to remedy the chaos, I set myself a totally manageable task: just understand, organize and present the scientific research on autoimmune disease in an accessible way. You know, just Marie Kondo autoimmune disease, without a database, or paid institutional access to research, or machine learning, or statistical analysis. Just label a limited number of boxes correctly, and then fill them with what is scientifically known. Easy peasy. To recap, my autoimmune organizational boxes are
genetic sex
inherited and acquired gene variations that increase susceptibility
gene triggering environmental exposures
multiple interactive and destructive immune system processes
My goal is to, over time, pile all the relevant components of named autoimmune diseases into those four interactive boxes in order to categorize autoimmune disease differently.
I also wanted to make the technically difficult scientific material that I could (mostly) understand, more accessible to a non-medical audience. My vision became a kind of Catalog of Autoimmune Diseases—a reference that autoimmune symptom sufferers could leaf through to find more than symptomatology—to find the scientific basis, or lack thereof, for diagnosis.
Going Forward
I’m excited to start a new job at the end of October, which is likely to impact the regularity of my posting schedule, but I will still be working away at completing Diagnosis Descriptions, posting timely news to Notes, and publishing explanatory posts. I also hope to create another sub-newsletter that elegantly and effectively illustrates how to present autoimmune diseases based on the four categories listed above. I’ve already started working on this behind the scenes, and it is still very much a work in progress. I’m excited to experiment with it during my second year.
Read, Share, Subscribe
Your readership means so much to me. Thank you. Please share AutoimmuneDx with anyone you think it would help. If you haven’t already, please consider subscribing.