Sjogrens Syndrome - My Mother's Story

As my mother approached middle age, we all watched what seemed to be a strange illness beginning to affect her. She was tired quite a bit, her joints were aching and she constantly complained of her mouth being dry. My dad, my sister and brother and I didn't know what to do. She seemed to be getting worse fairly quickly.

We took her to her family doctor, they diagnosed her as having arthritis, and possibly Lupus told her the medicine she was taking was causing her dry mouth, and couldn't explain the tiredness other than saying it was age. At this point my mother was just in her late fifties. They treated the arthritis, but still no relief. We watched her go from a very busy, always on the go person to a tired, aching and scared woman. Her family doctor finally sent her to an arthritis specialist at Baylor Hospital in Dallas, Texas. After a complete exam, blood work-up and physical he told her that she had Sjogren's Syndrome. What is that we asked, we had never heard of anything like it, yet we could see what it was doing to our mother's health.

Let me first give you an idea of what Sjogren's Syndrome (pronounced show-grins) is. Sjogren's Syndrome is an incurable, autoimmune disorder that strikes 2-4 million Americans, nine out of ten individuals with Syjogren's are women. In Sjogren's Syndrome, the body's immune system mistakes its own moisture producing glands for foreign invaders. The immune system then attacks and destroys these glands causing the main symptoms of dry eyes and mouth.

Some of the symptoms of this little know syndrome are blurred vision, constant eye pain, recurrent mouth infections, swollen glands, hoarseness and difficulty in swallowing or eating. It can also cause skin, nose and vaginal dryness and can, in some cases, effect kidneys, blood vessels, lungs, liver, pancreas and even the brain. The severe fatigue and joint pain can seriously impair the quality of life. If you suffer with dry mouth as my mother does, she has spent several thousand dollars on dental work, due to the dryness in her mouth. She finally had to have her teeth pulled and chose to have implants placed, due to the dryness it would be hard to get dentures to fit correctly.

Needless to say, we were so happy to know what my mother had, but also wanted something to fix it as soon as possible. Unfortunately, we were told there was no cure, you can only treat her symptoms. The worst part for my mother has been, the dry mouth, there are days when she can hardly talk her mouth is do dry. Her arthritic symptoms are being controlled by drugs, but still there are days when she really suffers with this also. She has been lucky enough to be accepted into a drug trial program, for a medicine to help with the dry mouth and eyes, she no longer has tears to cry or saliva for her mouth. The medicine she is using in the study is helping, but once the study is done this medicine will not be available to her for 2 years.

Diagnosis of this syndrome is very difficult, because the symptoms can mimic other diseases. Making this even worse is the fact that no two people with Sjorgen's Syndrome have the same set of symptoms or medical history. Once Sjorgen's is suspected there are blood test that can be run to determine the degree of this syndrome that you have.

Most women with Sjogren's are diagnosed in their post-menopausal years, younger women can also have it. Children born to these women have an increased chance of having serious heart defects.

This syndrome that my mother is living with daily has changed her way of life completely. She can't be out in the sun as her skin breaks out really bad, she constantly has to be drinking water just to be able to talk because of the dryness of her mouth. Still more symptoms appear for her daily. Since there is so little known about this disease, she is really walking in unchartered waters. She is now having severe stomach problems, which her doctor tells her is her colon going into spasms because of the fluid drying up in her body. No one knows the life expectancy of these patients, once again because of the unknowns about Sjogren's Syndrome.

I watch my mom suffer daily and wonder am I going to have this someday or do I already have the early symptoms that are just yet undetectable. The symptoms can sit for years before they begin to show up. The uncertainty is hardest for her and my family to deal with.

They have come out with some over the counter medicines for those with dry mouth and they do seem to be working well for her. She also had plugs put in her eyes to try and help the dryness, but this didn't seem to help her. She has joined a support group for other patients with Sjorgren's Syndrome. There are men and women of all different ages affected by this syndrome, but to date there is no federally funded program research on this disease. There are several programs through Baylor Hospital of Dallas, Texas and also a program for research and study through Baylor College of Dentistry in Dallas, Texas. It seems that the bottom line with this auto-immune disease is to see how it effects each person and to try and control the symptons.

For information and finding doctors in your area that can diagnose and treat this disease visit http://sjogrens.com. Also you can contact the Sjorens Syndrome Foundation for more information.