Thursday, November 14, 2013

The Rheumatologist: A Physician–Patient’s Experience With Sjögren’s Syndrome

Here's a link to an excellent article entitled "A Physician–Patient’s Experience With Sjögren’s Syndrome", published in The Rheumatologist written by Sarah Schafer, MD. Her bio as listed in the article:

Dr. Schafer is a patient with Sjögren’s and an advocate for the Sjögren’s Syndrome Foundation. Previously, she was a public health physician focused on child health, family planning, and STD for the city of San Francisco and Contra Costa County.

Dr. Schafer has been severely impacted by our disease:

...what impacts my life the most is the disabling flu-like fatigue that is seen in 70% of primary Sjögren’s patients. This is not normal exhaustion that can be managed with rest and recovery. Because of fatigue, I have had nothing resembling a normal life for the past 11 years.

I have posted one of my favorite paragraphs here, but head over to The Rheumatologist to read the entire article:

.....Perhaps the greatest stumbling block to making the diagnosis of Sjögren’s is the self-perpetuating bias of the medical community that we are just not that sick. This was what I was taught in medical school. This notion seems to ignore the 20–40% of patients with severe systemic manifestations. Pain, fatigue, gut dysmotility, and neuropathies are not considered to be severe manifestations. Yet, these extremely common features are frequently far more debilitating than dryness. Many rheumatologists focus on dryness, often ignoring the extraglandular symptoms, particularly fatigue. Almost every Sjögren’s patient I know has heard some version of, “Just be glad you don’t have lupus.” This is about as sensitive as telling a breast cancer patient to be glad that she doesn’t have ovarian cancer. We have an illness that can turn our lives upside down...


AutoimmuneGal said...

Thanks for sharing this! Extremely powerful piece. I think the medical community is more likely to respond when a fellow doctor writes about his/her experience with Sjogren's.

It's also a great tool for other patients to send to family and friends to help explain how sick and disabling this disease is for so many.

Liz said...

Total agreement! The tiredness is unreal! Thanks for sharing this great article.

Gill said...

I echo the comment about thanks for sharing, I feel a fraud going for medical appointments. I am well - no I am not, lots of vague/minor things (so far...) all add up to a life impacting problem for which there is little, or no, understanding or sympathy.

Christine said...

I saw this article online and it was excellent!

Anonymous said...

Is it possible to make an appointment to see Sarah Schafer, MD. as a patient?