Friday, April 22, 2011

S is for Awareness

April is Sjogren's Syndrome Awareness month, so how could I not blog about it on 'S' day?

What is Sjogren's Syndrome? Sjogren's (show-grins) is an auto-immune disease that is chronic and has the person's white blood cells attacking their own moisture producing glands. Most people experiencing this have dry eyes and dry mouth, though there are several other symptoms.

I was diagnosed with Sjogren's when I became pregnant with my daughter (now two years old). Suddenly, the world made sense to me as the doctor explained this disease to me. I am always thirsty, my mouth is always so dry that I have to constantly drink something, my eyes dry out even with the super-hydrated contacts. No matter what I do, no matter how much I drink, I am always dry and wanting more.

I have what is called Primary Sjogren's--meaning it does not occur (yet) with any other disease, such as Lupus. There is no cure, although there is a medication that can help alleviate some of the symptoms. This medication is over a hundred dollars a month--not feasible for someone unemployed or on a fixed income. Secondary Sjogren's comes along with another autoimmune disease (mostly Lupus or rheumatoid arthritis).


Muscle pain.

Back pain.

Difficulty concentrating.

Dry skin.

Numbness in fingers and toes.

Difficulty swallowing.

Recurrent nose bleeds.

These are just a few of the problems someone with Sjogren's suffers from. Not necessarily all at the same time, thank goodness.

What do I suffer from the most? Severe dry mouth which shut down my glands to the point where I did not produce saliva. Why is that such a problem? Saliva helps to wash germs from the mouth, decreasing gingivitis. Without this ability to produce saliva the gingivitis reigned supreme and eventually rotted all of my teeth. Two or three at a time, starting at the left side of my mouth and traveling to the right, would expose nerves and abscess. Then they had to be removed.

At the age of 27 every tooth in my mouth had been removed. I have bottom dentures, but am waiting to afford the top dentures. I am finally without the tooth pain, finally able to eat (soft) sweets and some candy again, where I had not been able to eat candy or chocolate for nearly ten years. I still have dry mouth and have to take frequent drinks. I have a spray that produces saliva in my mouth for me for those times I can't drink anything (like during church or preparing for surgery), and I have a mouthwash that does the same while making me minty fresh.

I have to use special eye drops to moisten my eyes on a regular basis. I was told I need surgery to plug the tear ducts in my eyes so that my eyes will keep more moisture. I have not yet had the money to do this.

I have chronic back pain that I was told by one doctor required surgery. I went to a specialist for a second (and better) opinion, and he informed me that surgery would not fix my problem since the pain stems from my Sjogren's. I am currently undergoing physical therapy for my back--if it works, I will have to do physical therapy the rest of my life.

My Sjogren's needs to be frequently monitored to ensure it does not also develop into Lupus or cause liver problems. This requires blood work every six months (which I do not have the money for either).

Most of the people affected by Sjogren's are women in their post-menopausal years. I am one of the rare (but increasingly not becoming so) women who have it so advanced at so young an age.

Awareness of this disease needs to be spread. There is so much more to this, and I am still learning new aspects of it every week! Please check out the Sjogren's Syndrome Foundation website for information and become more aware of this disease that plagues more than four million Americans!


  1. You should work in advocacy and go running around Capitol Hill to raise awareness and get some funding for research!

  2. They have what they call Ambassadors who get trained to spread awareness of Sjogren's. I'm not sure if they are paid or not, but I would like to become one of these since I am one of the few younger people who have such an advanced state.

  3. I had never heard of this before. Thank you for the awareness.