Sjogrens Syndrome
Are you sick and tired of being sick and tired? Better yet, are you tired of going to the doctor and having him or her look at you or treat you as if you are a hypochondriac? Listen and take heed, you may not be out of your mind.
There is a disease named Sjogrens Syndrome that affects over four million people. Ninety percent of the people affected are women. As of now the onset of Sjogrens is thought to be around the age of forty or premenopausal but I have heard of cases where younger women and men are affected as early as their twenties.
Sjogrens Syndrome, I will refer to it as SJS, is an autoimmune disease in which the body’s immune system attacks the moisture producing glands, in other words the body attacks itself.
Fifty percent of the time SJS occurs alone and fifty percent of the time it occurs with another connective tissue disease. Most common connective tissue diseases associated with SJS are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. Sometimes researchers refer to the first type as “Primary Sjogren’s” and the second as “Secondary Sjogren’s.” All instances of Sjogren’s syndrome are systemic, affecting the entire body. The hallmark symptoms are dry eyes and dry mouth Sjogren’s may also cause dryness of other organs, affecting the kidneys, GI tract, blood vessels, lung, liver, pancreas, and the central nervous system. Many patients experience debilitating fatigue and joint pain. Symptoms can plateau, worsen, or go into remission. While some people experience mild symptoms, others suffer debilitating symptoms that greatly impair their quality of life. (http://www.sjogrens.org/syndrome/).
The doctors that commonly diagnose SJS are Dentists, Rheumatologists, Ophthalmologists and a Gastroenterologists. The disease itself is not fatal but it does make one’s life miserable. In this writer’s case, I suffer from migraines, fatigue, dry eye, and dry mouth and ache all over.
Let us look at dry eye for one moment. Dry eye is not just about discomfort. Severe dry eye makes one not see very well and can cause the onset of migraines. At times it feels as if you are seeing underwater, the world is blurred. The sun and bright lights are not the friends of someone with dry eyes.
About dry mouth – severe dry mouth can cause one to loose their teeth. Also, a person can find that their lips are stuck to their teeth when they wake in the mornings. There can be sores all through your mouth because of dry mouth. Dry mouth also can cause problems swallowing, hence the chance of choking.
SjÃ?¶gren’s syndrome often is undiagnosed or misdiagnosed. The symptoms of Sjogren’s syndrome may overlap or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and Sjogren’s can involve several body systems, physicians and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is over six years. (http://www.sjogrens.org/syndrome/) In this writers case it took over twenty years.
Two years ago I had not yet been diagnosed with SJS. I had gone into the emergency room feeling as if I were dying and I was right. The Doctors were confounded, they had no clue why my body was shutting down. My pancreas, kidneys and liver were failing. Doctors admitted me to the intensive care unit where I stayed for a week fighting for my life. Total hospital time was two weeks. Total recovery time – ongoing. SJS has no cure. The most the medical community can do for SJS patients is to try and make the quality of our lives better which, does not pay the bills since quite a few SJS patients can not hold down a job.
There are not many resources out there for those of us who suffer from SJS. Family support can be difficult because we “look” healthy and people do not understand why we do not feel as we look. Information and resources have a long way to go in educating the rest of the world about the SJS dilemma as for right now all we have is the Sjogrens Foundation.
If you exhibit any of the above symptoms please ask your Primary Care doctor to refer you to see a Rheumatologist, Ophthalmologist or Dentist.
