My Story

Hello, my name is Samantha. I am a 25 year old mother of two beautiful girls, Ashley and Brittany. I live in Livingston Parish, Louisiana with my boyfriend of three years, Kenny.

All of my life, I have been relatively healthy. You know, just regular boughts with colds, childhood chicken pox, the normal stuff. So, when my doctor told me I had Sjogren's this was very disturbing to me.

I was diagnosed on Dec. 21, 1998. I originally went to see about sometimes unbearable pain in the joints of both of my hands, which started about two years ago with just funny feelings like they feel when they are "asleep". My doctor almost instantly diagnosed me with arthritis and ordered nerve and blood tests to rule out Corpral Tunnel Syndrome and whatever else. My nerve test was "text book" according to the neurologist and I was relieved. I could handle having to live with the arhthritis, because the Naprosyn he prescribed helps incredibly and arthritis is something most of us will have to encounter later in life anyway, so I'd just have to learn to deal with it earlier.

The blood test told a different story. My doctor started talking about Lupus and other conditions that could kill or cripple me and I got really nervous. So, in December I saw him to find out the end result of all of the blood tests and it was, and still is Sjogren's Syndrome.

I have secondary Sjogren's. It occurs along with the rhematoid arthritis and hopefully not much else. I am afraid I have Scholerderma, which affects the skin and makes it chronically dry and itchy, because sometimes it scratch so much I feel like I and going to loose my mind! Only since I have been researching this strange disorder, have I realized how much it has affected me. I thought bad vision was the cause of my itchy eyes, but it's Sjogren's. The increased dryness can cause horrible eye infections if not properly mositurized. My dry mouth and nose gets so bad sometimes, it's hard to breathe Also, I've learned that the lack of saliva can ultimately destroy my teeth. I always laughed about the weird little dry patch of skin under my left eye and I read that another Sjogren's patient has it.

All of these going on in one person's body all at the same time can get to be pretty mind boggling and sometimes make you feel like you're falling into a black hole. The support of family and friends is very important. Distance yourself from negative people and those who don't know how to give the support you need.
This is a REAL disease and there is NO CURE as of yet.

I have dedicated myself to trying to publicize this disorder and I hope, soon, more funding will become available and more people will become interested in researching this so we can hurry to find a CAUSE and a CURE for Sjogren's Syndrome.

If you have any ideas or want to help, please e-mail me. mambowhich@hotmail.com

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