A few days ago, I wrote a post in which I included links to the American College of Rheumatology. A few readers sent some very good emails in which they pointed out problems with the Sjogren's patient information, specifically this section of the page:
BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROMERead this response to the above information from Dr. Sarah Schafer:
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.
Rarely, patients may have complications related to inflammation in other body systems, including:
- Joint and muscle pain with fatigue
- Lung problems that may mimic pneumonia
- Abnormal liver and kidney function tests
- Skin rashes related to inflammation of small blood vessels
- Neurologic problems causing weakness and numbness
....ACR page outdated and misleading as to spectrum and severity of disease. 20- 40 % have organ involvement. 70 % have disabling fatigue. I hardly call that a normal healthy life!
Also, most are diagnosed when older, yet delays in diagnosis standard, about 4.7 years ave. from seeking diagnosis. Most of the people I interviewed for my Case Studies presentation had symptoms for decades, often puzzling, and usually not severe enough to seek diagnosis. When we can diagnose Sjogren's early and accurately, the age of patients will be much younger!
I think the more important issue is not how this website affects patients – few of them will read it - but that this organization is what rheumatologists look to for guidance. This publication reinforces incorrect information, perpetuating the “Sjogren’s is not a serious disease” fallacy. The result: We don’t get diagnosed. We don’t get taken seriously by most docs when we are diagnosed, and little incentive to fund clinical treatment studies.
Until the ACR gets on board, educating its members about the multisystem nature of the disease and spectrum of severity, we won’t get good care, except by the few docs who go out of their way to understand Sjogren’s. It is rather outrageous that the specialty who is supposed to care for us remains woefully ignorant overall about the current understanding of Sjogren’s.I have to confess that when I linked this information to my post, I gave it only a cursory read-through. After a second reading, I would have to agree with Dr. Schafer and others' concerns regarding the ACR's dismissive attitude towards burden of disease aspects of Sjogren's syndrome.
Once again: Even at the highest levels, our disease needs more research, more accurate assessment, and better awareness of it's severity.