Due to the invisible nature of autoimmune diseases, many of its patients look normal and healthy. This presents a challenge for patients’ social sphere, a struggle when seeing doctors for diagnosis, and a lack of general awareness and knowledge of all autoimmune diseases. Despite the many statistics on autoimmune disease, it’s time to put a voice to the numbers.
We present to you, a snippet of our shocking Stanford MedicineX Workshop Survey responses.
Believe it or not, these are the real experiences and words of the lonely voices of autoimmune disease.
It took 7 years and more than 13 doctors to get them to even TEST for my autoimmunity.
It took me 5 years and 12 specialists to be diagnosed with Celiac and Hashimoto’s.
I want the next person to be diagnosed on the first doctor.
I went through several decades of primary doctors dismissing my symptoms because the tests they chose to run came back “normal.”
4 Comments
Autoimmune Patients and COVID-19: Useful Basics (Part 1) · April 3, 2020 at 4:53 pm
[…] any acquired immunity–is particularly dangerous for people with dysfunctional immune systems. Autoimmune patients and their caretakers are already concerned about everyday infectious diseases (including the […]
Frustrating Autoimmune Patient Journeys – Autoimmune Connect · June 15, 2023 at 7:25 pm
[…] of the issues raised in this post could be solved by providers taking the time to listen to the voices of their patients. Patients know what they are experiencing better than anyone else. Rather than treating a list of […]
Mission Critical: Patient-First Strategy for Digital Health – Autoimmune Connect · April 17, 2024 at 6:03 pm
[…] my involvement in patient communities and interviews (see Medx findings), I learned navigating the healthcare system feels like running a […]
The Emerging Patient Voice in Rheumatology – Autoimmune Connect · April 17, 2024 at 6:19 pm
[…] I encourage you to check out how far the patient voice has truly evolved in the past ten years; our previous work from a Stanford MedicineX Workshop Survey is a reminder of how easily patient voices were once […]