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Sjogren's Syndrome: Wandering in the Desert

It takes years before the average patient with this disorder gets a correct diagnosis.

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At first, Claire began noticing that her mouth was very dry and that she needed to carry a bottle of water with her. Soon she noticed that she had to use drops frequently because of the dry, gritty feeling in her eyes.

But one morning, upon opening her eyes, she felt a ripping sensation in her left eye and then a sudden, severe pain. Suddenly, she noted her vision in that eye was very blurry. In the ED, she was diagnosed with a corneal abrasion. Claire was advised to use an eye ointment in both eyes every night before going to bed to prevent corneal abrasions, corneal ulcers and possible blindness.

Over time, Claire felt like she was living in a desert, always having hot, burning, dry eyes and feeling thirsty. At age 45, she developed more cavities and had more difficulty swallowing and tasting food. She needed saline nasal sprays to keep her nose moist due to frequent episodes of epistaxis.

Claire had no idea her body was working against her, producing antibodies that were attacking the glands that produced moisture in her body.

Delayed Diagnosis

Over several years, Claire noted significant pain in her joints, and her skin became extremely dry and pruritic. She would break out in rashes that appeared to have no cause.

Despite having seen a dermatologist for the rash and an ophthalmologist for the dry eyes, no one put the pieces together. No one realized that one diagnosis existed to explain all her signs and symptoms.

Then one day, while visiting her pharmacist to pick up antibiotics for an eye infection, Claire found a pamphlet describing Sjögren's (pronounced SHOW-grins) syndrome. The pamphlet described all of her signs and symptoms.

When Claire visited the Sjögren's syndrome website, she found a lot of support to help her understand the disorder. For the first time in many years, she felt a new kind of hope.

After an appointment with a rheumatologist, her diagnosis of Sjögren's syndrome was confirmed. At last, she did not have to wander in the desert of not knowing what was at the root of her health concerns.

Claire had her signs and symptoms for nearly 8 years before finally getting a proper diagnosis and treatment. Is that unusual? No, not at all; the average patient with Sjögren's syndrome goes for 6-8 years before getting a correct diagnosis.

Should healthcare professionals be blamed for this?

Prevalence

Again, no, because many medical training programs do not emphasize Sjögren's syndrome in their curriculum, even though it is a common autoimmune disorder in the U.S., second only to rheumatoid arthritis.

More than 4 million people in the U.S. have Sjögren's syndrome, and though it can occur at any age, it most commonly presents in the 40s and 50s. With the population aging, more individuals are experiencing Sjögren's syndrome.

The disorder is much more common in women, with a ratio of 9 women to every 1 man.

Treatment

While dry eyes and dry mouth are the hallmarks of Sjögren's syndrome, nearly every organ system in the body can also be affected by this disorder, including the lungs, kidneys, joints, muscles, and the digestive, reproductive and nervous systems. Patients with Sjögren's syndrome are also at greater risk for non-Hodgkin's lymphoma.

But although Sjögren's syndrome has no cure, many excellent treatments are available. Of course, the first step to getting appropriate treatment is to have the disorder properly diagnosed.

To learn more about Sjögren's syndrome, visit www.sjogrens.org.

There's no need to wander in the desert of not knowing about this disorder any longer.

Diane L. Stadtmiller has been a certified physician assistant for more than 20 years. She is past president of the New York State Society of Physician Assistants and the current president of the Regional Physician Assistants of Central New York. She is the regional coordinator for the Syracuse area for the national Sjögren's Syndrome Foundation.




     

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