Wednesday, September 7, 2011

Good Press

Me in my "Good grief, coffee! Start working this morning!" pose. 

It's been gratifying to see the numerous articles published recently about Sjogren's syndrome and Venus Williams. But we sjoggies don't mind that Venus is getting the lion's share of the attention.

We're just glad that Sjogren's syndrome is finally in the limelight.

I've mentioned before that the sjoggie community has been buzzing. The most recent take on the conversation has shifted from "Can you believe someone would publish such an inaccurate article?" to something like this: "Here's a really good article, for a change!" or "Hey, read this!" or "I liked this one.."

So here's my contribution to the new discussion: This from Medpage Today is my latest Sjs/Venus media recommendation. The article goes beyond a few pat phrases that can be seen everywhere about Sjs. Author Nancy Walsh has done her research and includes bits of information regarding diagnostics and types of useful medications, but best of all is her simplified explanation regarding the cells within our bodies that may be responsible for Sjs symptoms.

Here's an excerpt, but you can read the entire article here.
The disease is characterized by destruction of the exocrine glands, leading to excessive dryness of the mouth and eyes. 
But Sjögren's syndrome also is associated with symptoms such as debilitating fatigue and musculoskeletal problems that could seriously interfere with athletic performance. 
"It's my suspicion that it may have been the systemic manifestations like fatigue and joint pain that have been troubling her and that could be difficult for a person trying to function at that very physically demanding level," Robert Spiera, MD, director of the vasculitis and scleroderma program at the Hospital for Special Surgery in New York City, told MedPage Today. Spiera has not been involved in Williams' treatment. 
.........B cells are thought to play a crucial part in the development of Sjögren's syndrome, accumulating and becoming hyperactive in the exocrine glands and heightening immune antigenic responses.


annie said...

I read the article, thanks for posting the link. There is an excellent article in the NY Times that you can link from the Medpage article, where Venus describes some of her symptoms.

I went through a period years ago,where I was always short of breath and was given asthma meds which would debilitate me even more. I can totally relate to what Venus is describing. We've all been there when we're sick and no doctor finds what ails you. We totally understand.

Stanglizzy said...

My husband came across your blog and sent it on to me...
Over the last couple of years I have been diagnosed with: Reynauds, Hoshimotos and dry eyes. In addition, I suffer from severe fatigue. I am currently on my third rheumotologist and have gone through two eye doctors with an appointment at the UW on October 20th for my third eye doctor. I take Nuvajel for fatigue and it's helped some.

My eyes have taken the biggest beating: multiple rounds of steroids, Restasis, duct plugs, cauterized ducts, preservative drops, fish oil, flaxseed oil, nightly heat compresses, lid scrubs and gel. But worst of all... vision loss.
My labs do not say "Sjogrens" but that's what my doctor thinks I have. He'd like me to do a lip biopsy but feels no-one knows how to do it properly around here. He'd like me to go to the Sjogren's clinic at USC San Francisco.
Do you know of other cases where the labs didn't say Sjogrens, yet it was? Any advice? Thanks.

Julia Oleinik said...

Hi Stanglizzy,

Yes, it can take awhile for the auto antibodies to show up in labwork. And your doctor is wise to send you to a clinic that does lip biopsies on a regular basis, since it's a tricky procedure.

Wow - your symptoms certainly are classic Sjogren's syndrome. Keep me posted as to how you are faring and how your lip biopsy goes.

I'm thinking of the old adage: If it looks like a duck, and walks like a duck and quacks like a duck.......