Wandering in the Desert

At first, Claire began noticing that her mouth was very dry and 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, when 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 ER, she was diagnosed with a corneal abrasion.  She 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 nose bleeds.  Claire had no idea that her body was working against her -- producing antibodies that attacked the glands that produced moisture in her body. 

 Over several years, Claire noted significant pain in her joints and her skin became extremely dry and pruritic. She would break out in rashes which appeared to have no cause. Despite seeing a dermatologist for the rash and an ophthalmologist for the dry eyes, no one put the pieces together.  No one realized there was one diagnosis existed to explain all her signs and symptoms.  One day when visiting her pharmacist to pick up antibiotics for an eye infection, she 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.

 What is interesting about this scenario is that 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 -- because the average patient with Sjögren’s Syndrome goes between six to eight years before they finally get a correct diagnosis.  Should healthcare professionals be blamed for this?  Again no, because many medical training programs do not emphasize Sjögren’s Syndrome in their curriculum, even though it is the second most common autoimmune disorder in the United States, second only to Rheumatoid Arthritis. 

 Over four million people in America suffer from Sjögren’s Syndrome and though it can occur at any age, most commonly it presents when a person is in the 40s and 50s.  With the population aging, more and more individuals are experiencing the signs and symptoms of Sjögren’s Syndrome.  The disorder is much more common in women, with a ratio of 9 women to 1 man being affected. While dry eyes and dry mouth are the hallmarks of Sjögren’s Syndrome, unfortunately nearly every organ system in the body can also be affected by this disorder, including the lungs, kidneys, joints, muscles, the digestive, reproductive and the entire nervous system.  And unfortunately, patients with Sjögren’s Syndrome are also at greater risk for Non-Hodgkin’s Lymphoma.  While there is currently no cure for Sjögren’s Syndrome, there are many excellent treatments available, but the first step to getting appropriate treatment is to have the disorder properly diagnosed. 

 Each month of the year, many health care support organizations provide Awareness Months to educate people about various diseases and disorders.   April is National Sjögren’s Syndrome Awareness Month. It is wonderful opportunity to learn more about a disorder that can be treated so that individuals can live healthier, happier and more productive lives.  To learn more about Sjögren’s Syndrome, please visit www.sjogrens.org. 

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

 About the author:  Diane L. Stadtmiller has been a licensed, nationally certified Physician Assistant for over 20 years.  She is a past president of the NY State Society of PAs, and the current president of the Regional Physician Assistants of Central New York. She serves as the regional coordinator for the Syracuse area for the national Sjögren’s Syndrome Foundation. eruditepa@aol.com