These are photos of my body/skin when my body is flaring from Adult Onset Stills Disease. I have a very hard time looking them when I’m doing well because it reminds me of the pain I endure when this disease flares. But maybe these photos can help somebody else who is suffering. I want to post these photos because, as I had these symptoms, the MD’s, all 33 of them at all the hospitals I went to, had zero clue of what disease I had.
I have provided a copy of my hospital discharge report which provide my labs to provide a clearer picture of what ASOD looks like from a lab standpoint when I was in the hospital.
Other people may have different labs values depending on which organ is affected, but ferritin levels, daily fever at same time, salmon colored rash non-raised, chills/rigors, migrating joint pain and drenching sweats could be a clue to investigate a diagnosis of AOSD. I have corresponded by email with a 2 people in other parts of the world, learning that it was not their liver that was affected it was their heart. Even though my labs were putting together a picture of the characteristics that define Adult Onset Stills Disease, if the physicians are not familiar with the disease, then the patient will continue to suffer until, A) the patient/family are extremely persistent in trying to find a diagnosis as I was, or B) they suffer and/or die, as a few critical care physicians at several of the hospitals I work at have informed me.