Thank you for writing about this! I got diagnosed last year and honestly thought i couldn’t have it because i was young but that’s definitely not true. It’s a struggle but I appreciate the new attention to it!
I'm so happy to see you drawing attention to this neglected autoimmune disorder. If I could encourage you to add anything or to make an edit, it would be to more specifically name and address the fact that it's estimated that 50% of people with Sjögren's also have one or more forms of dysautonomia, such as POTS, and that symptoms due to POTS and other forms of dysautonomia are often among the first symptoms of the onset of Sjögren's and can predate "classic" symptoms like sicca or xerostomia by years, and that this "neurological first" presentation is more common in those who develop Sjögren's at younger ages.
"Dysautonomia, or dysfunction of the autonomic nervous system, is an underappreciated yet increasingly recognized aspect of SS. Autonomic involvement may include orthostatic hypotension, gastroparesis, urinary retention, excessive sweating or anhidrosis, and cardiac arrhythmias. These symptoms arise due to immune-mediated damage to autonomic nerve fibers, impairing the body's ability to regulate involuntary physiological functions. The clinical significance of dysautonomia in SS cannot be overstated, as it substantially contributes to the disease burden and adversely affects patient quality of life. Despite its prevalence, dysautonomia in SS is frequently misdiagnosed or overlooked, as conventional neurological assessments often fail to capture autonomic dysfunction, necessitating specialized testing such as heart rate variability (HRV) analysis, tilt-table testing, and quantitative sudomotor axon reflex testing"
Spectrum of Neurological Complications in Sjögren’s Syndrome: A Comprehensive Review
I’m a patient who presented with neurological and musculoskeletal symptoms first. Then came the sicca and kidney damage. Throughout the decades, I remained seronegative, and I’m still trying to get treated.
Just left my eye doctor after experiencing yet another bout of Sjogren’s induced keratoconjunctivitis that led to an ulcer on my eye. Finding a dry eye specialist has been critical for me! I also think there’s some missing connections between Sjogren’s and infertility (10 years for me). Mucous glands play a big role in getting pregnant. As always, treating any underlying cause of infertility would be highly beneficial in helping patients avoid the stress and cost of methods like IVF.
Thank you for writing about this. I'm a Sjogren's patient and truly do feel like we're one of the underdogs of rheumatology, and so I very much appreciate the care and detail in this well-considered overview. I do believe better days are coming, with promising trends in Phase 3 results for the new Sjogren's-specific biologics.
Thank you for writing about this! I got diagnosed last year and honestly thought i couldn’t have it because i was young but that’s definitely not true. It’s a struggle but I appreciate the new attention to it!
Also wanted to mention that I’m pretty sure pregnancy and those hormonal changes triggered it for me!
I'm so happy to see you drawing attention to this neglected autoimmune disorder. If I could encourage you to add anything or to make an edit, it would be to more specifically name and address the fact that it's estimated that 50% of people with Sjögren's also have one or more forms of dysautonomia, such as POTS, and that symptoms due to POTS and other forms of dysautonomia are often among the first symptoms of the onset of Sjögren's and can predate "classic" symptoms like sicca or xerostomia by years, and that this "neurological first" presentation is more common in those who develop Sjögren's at younger ages.
"Dysautonomia, or dysfunction of the autonomic nervous system, is an underappreciated yet increasingly recognized aspect of SS. Autonomic involvement may include orthostatic hypotension, gastroparesis, urinary retention, excessive sweating or anhidrosis, and cardiac arrhythmias. These symptoms arise due to immune-mediated damage to autonomic nerve fibers, impairing the body's ability to regulate involuntary physiological functions. The clinical significance of dysautonomia in SS cannot be overstated, as it substantially contributes to the disease burden and adversely affects patient quality of life. Despite its prevalence, dysautonomia in SS is frequently misdiagnosed or overlooked, as conventional neurological assessments often fail to capture autonomic dysfunction, necessitating specialized testing such as heart rate variability (HRV) analysis, tilt-table testing, and quantitative sudomotor axon reflex testing"
Spectrum of Neurological Complications in Sjögren’s Syndrome: A Comprehensive Review
https://www.cureus.com/articles/317203-spectrum-of-neurological-complications-in-sjgrens-syndrome-a-comprehensive-review#!/
https://sjogrens.org/blog/2023/dysautonomia-in-sjogrens
https://dysautonomiainternational.org/blog/wordpress/your-dysautonomia-may-be-caused-by-sjogrens-disease-heres-why-that-matters/#:~:text=Sjogren's%20affects%20everyone%20differently.,Sjogren's%20diagnosis%20missed%20or%20late?
I’m a patient who presented with neurological and musculoskeletal symptoms first. Then came the sicca and kidney damage. Throughout the decades, I remained seronegative, and I’m still trying to get treated.
Care. I have PMR. It took several doctor visits to finally diagnose it. The medications immediately helped and I have doing well for years.
Good to see advancement in treating other diseases.
Just left my eye doctor after experiencing yet another bout of Sjogren’s induced keratoconjunctivitis that led to an ulcer on my eye. Finding a dry eye specialist has been critical for me! I also think there’s some missing connections between Sjogren’s and infertility (10 years for me). Mucous glands play a big role in getting pregnant. As always, treating any underlying cause of infertility would be highly beneficial in helping patients avoid the stress and cost of methods like IVF.
Thank you for writing about this. I'm a Sjogren's patient and truly do feel like we're one of the underdogs of rheumatology, and so I very much appreciate the care and detail in this well-considered overview. I do believe better days are coming, with promising trends in Phase 3 results for the new Sjogren's-specific biologics.
Hey — I came across your writing and really liked how you think.
I’m exploring something similar from a different angle — writing about human behavior through a system design lens (like debugging internal patterns).
Just started publishing on Substack. If you ever get a moment to read, I’d genuinely value your perspective.
Also happy to support your work — feels like there’s an interesting overlap here.