Hi, my name is Terri.  I live in Dallas, Texas and I am 52 years old.  At the age of 28, I was diagnosed with Primary Sjogren's Syndrome following a lip biopsy and positive SS-A and SS-B antibodies.  I also tested positive for Anticardio Antilipins and was told not to have any more babies because of the potential heart blockages of babies born to mothers with Anti-cardio Antilipins.  My two previous babies were born healthy and the third one that I had after the warning was born healthy also.  My mother had primary SLE, Sjogren's and Raynaud's and has since passed away.  So I believe there must be some genetic predisposition amongst family members. It is too much for mere coincidence.

     Back in 1988, I really did not suffer much from any discomforting Sjogren's symptoms until I grew older.  As a matter of fact, my symptoms have become quite progressive in nature and rendered me disabled by the Social Security Administration in 2004.  Despite being disabled, I continued to work to try to support my family until recently when I have become so ill that I just can't do it anymore and was rendered disabled again in 2010.

     My Sjogren's is systemic and affects my upper GI tract with nausea, weight loss, gastroparesis, chronic fatigue and depression. I also have been diagnosed with Raynaud's, Fibromyalgia, Malignant Hypertension, and a very rare disease called Fibromuscular Dysplasia, (FMD).  FMD causes chronic, untreatable hypertension, weakening of all the major arterial walls predisposing me to the potential for spontaneous arterial dissection, aneurysms and stroke.  There are only about 6 physicians in the US that treat FMD so I just came back from the Cleveland Clinic where I met with the top FMD specialist, a Sjogren's specialist, neurologist, opthamologist, GI specialist and geneticist.  It was truly a valuable experience to see all of those specialists and have them collaborate together as a team to treat my conditions.

     My greatest problem is my GI involvement, particularly my nausea.  I am told that because of my Sjogren's, my stomach doesn't always absorb/break down oral tablets or capsules.  Liquid or injectable medications work better for me.  Sjogren's has also significantly affected my social life since I am often fatigued or nauseous.  Also, friends, and even my grown children I don't think really understand what I am going through and my lack of quality of life.  Sjogren's is not a well-publicized disease like Cancer.  When people do research it, they believe that it is just a case of dry eyes and dry mouth.  Not many understand the systemic ramifications of the disease.  I wish more did.

     I would love to hear from anyone with similar symptoms, suggestions, or questions.  I am also interested in starting a Sjogren's support group in North Dallas.  There is one in Southern Dallas which is a long difficult drive for me.  I believe that as large as Dallas and its northern suburbs are, that there would certainly be enough interested people to start a group in the northern sector of Dallas.  If you know of anyone, please forward them my email.  With a little luck, perhaps I can start one soon.

With warm regards to all,

Terri