Tuesday, June 24, 2014

A Closer Look

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:
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
Read this response to the above information from Dr. Sarah Schafer:
....ACR page outdated and misleading as to spectrum and severity of disease.  20- 40 % have organ involvement.  70 % have disabling fatigue.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.


Nicole said...

Also, the recent finding presented at EULAR that Sjogren's increases risk of cardiovascular disease by 2.5X would change the seriousness with which it is viewed, I would think. So many press releases say that there is no mortality increase with Sjogren's. What we don't know can't hurt us, I guess.

Heda said...

Exactly. Sjogren's Syndrome is not exotic or sexy or even particularly rare but regardless of what many think, including many in the medical profession, it can be a serious, debilitating disease that can steal your life bit by bit.

Jane said...

I'm glad Dr Schafer is on our side. I agree that the most troubling thing is how rheumies perceive the illness. It took me 12 years to get a diagnosis and since my rheumy retired, the next two attempts all but dismissed I had the disease because I am seronegative. This illness has derailed my life since I was 24, but it is largely dismissed by professionals as dry mouth and dry eyes. I could write a book about the fatigue alone, but alas, I'm too tired to!


Peggy said...

And I would also add vision problems!
I would go so far as also saying that the Sjogren's Foundation is guilty of not stepping it up a bit. Do you know of ANYONE (other than another Sjogrens patient) that is aware of Bold Blue Day?????
If all that is absorbed is what the ACR prints what can we expect? That's why health care professionals continue to refer to it as "the dry eye/dry mouth thing". And dentists and periodontist's who should be the first ones to notice that something is not exactly right when you have obvious signs of decalcification are disturbingly silent.
I am comforted that you and Sarah Schafer and others are out there raising your voices a bit and educating.
thank you from the bottom of my little heart.

Nancy Joyce said...

Saw a rheumatologist for a second opinion due to med problems earlier this year. She is well regarded as a teacher at UBC and as a researcher for the Canadian Arthritis Society. Her medical advice: drink lots, see your dentist often, take Tylenol; otherwise there is nothing I can do for you. When I asked her , incredulously, "what about the fatigue?" Her answer "Sleep more". I went home and wept. (Actual tears flowed!)

Happily, my current rheumy is treating this seriously but I don't really think he understands the breadth of how this disease effects my body.