Sjogrens Defined - my definition of Sjogrens Syndrome (SS)

I was formally diagnosed with Sjogrens Syndrome (SS) mid 2012.  The aim of my blog is to spread awareness of this debilitating condition and to serve as a network for fellow sufferers.

So what is Sjogrens Syndrome?  SS is an auto-immune condition affecting mostly women although there are men with the condition.  The immune system attacks the body's own tissues - mainly the tear producing glands behind the eyelids and the salivary glands in the mouth.  The body produces antibodies which react with and damage the tissues and nerve signals to your glands, reducing the amount of saliva and tears produced.  This has a profound affect on your oral health and significant dental decay and dry mouth is a main side effect as lack of saliva enables acid within the mouth to corrode the teetch.  Mouth and lip ulcers are also common and can be painful enough to affect the ability to eat certain foods.  Chronic fatigue and general achiness (similar to the onset of flu) are the norm leading to a decease in general activity.  Some will go on to develop rheumatoid arthritis and a temperature inbalance with increased sensitivity to heat and cold is also common.  Low blood pressure and the body's ability to pump blood to the extremeties can cause increased sensitivity to heat and cold and also balance and spatal awareness issues.  Impaired circulation can lead to 'brain fog' and inability to retain information or comprehend external messages (ie driving can become difficult).  Muscles may weaken although there may be no outward sign of loss of muscle tone.  For all of us exercise is vital to ensure ongoing health at all levels but the ability to do so has to be balanced with the energy available at the time.  Frequent periods of rest throughout the day are required to avoid hitting the wall or burn out.  This condition can be socially isolating as driving becomes difficult and the ability to interact with others for any length of time is decreased due to fatigue is compromised.  The financial implications of no longer being able to work are immense and a constant struggle for some. 

Adjusting to life post diagnosis can be problematic and stressful as you navigate symptom control, learn and become comfortable with the medical terms and embark on the journey that is SS.  I call this finding your pathway forwarding and your map to get to that better place.  If I can be of help to you in finding your pathway and map I would love to hear from you and to share your experiences.  I am hopeful  of setting up an informal support group for those with SS so we can share what works for us for symptom control and to get the support that comes from talking with others who know what it is like.

much love, Sandra