Still the doctors did no further tests. My father had already been diagnosised with Lupus ten years before and asked that they test me. Their excuse was that I was too young to have a disease like that. At that time, there were very few cases of Lupus diagnosed in children.

Another year went by and I was twelve. I had every kind of sprained joint you can imagine. My mom would always asked the doctors why I kept hurting my ankles and knees so easily. They blamed it on the fact that I was a little over weight, that I just had weak joints, or that I was just in that clumsy stage! They always told my mother, "Don't worry -- she will grow out of it."

During all the sprains there still were all the so-called "viruses", which continued for two years. Two different physicians actually took my mom aside and said, "There is nothing wrong with her. You and your husband just baby her too much and she likes the attention. You might need to get her the help of a psychiatrist."
Needless to say, the effects of that statement on a twelve year old girl were devastating. Afterwards, I just refused to go to the doctor, no matter how sick I was. This caused a lot of family friction because my parents were worried. Yet I just couldn't face being told again that there was nothing wrong with me when I knew there was.

We then moved to another state and my mother started getting sick. She was tested for lupus, and it was positive. Yes, you have read right! Both of my parents have the same disease. It was the physician who diagnosed my mother that decided to test me for SLE. I was 13 at the time. My test results all revealed high levels of auto-antibodies. Suddenly, the doctors couldn't understand how I was functioning.

From then on, it was a relief finally a name for what was going on inside my body. Yet, it was also difficult to accept at such a young age, so I stayed in a form of denial and simply chose to ignore the fact that I had Lupus. I was scared to death to tell my friends because I knew they wouldn't understand, so I only told a very few. They just didn't understand why I was sick and tired all of the time. I was in and out of the hospital from that point. The kids would always say I was just there to get attention. Which, of course, is stupid, because you can't get admitted to the hospital if you aren't truly ill, but it hurt me nonetheless. I did make it through high school, and with pretty good grades too, I might add! My life wasn't "awful", but it was just not ever like that of the other kids my age.

I got married in 1992 and life was going good... or so I thought. My doctor had failed to tell me to stay out of the sun! The sun is dangerous for people with lupus. I got a bad sunburn that summer and developed discolored blotches of skin on my face. The doctor's response was as if it was unimportant, still failing to warn me of the dangers of further sun exposure. He simply said, "Oh, don't worry -- that's from your lupus and will go away when you start feeling better."

In 1994, we decided to have a baby. Pregnancy is supposed to be one of the greatest experiences in life. But not for me. I was sick from day one. I lost even more of my hair and was generally very ill throughout those nine months. Fortunately, I have a beautiful, healthy boy today, but it is without any credit to the doctors who cared for me. I went to a hospital that supposedly specialized in Lupus pregnancies. I wouldn't recommend this place to my worst enemy! After 56 hours of labor, my boy finally made his debut into this world. The next six months that followed were the worst I have experienced. I made it through by the grace of God and my wonderful family. I developed an infection from being in labor so long, and it took seven months for the incision to finally heal.

Once I got back on my feet, I decided to return to work. I was able to work for three years before the disease forced me to quit. I just could no longer handle it. That's one of the secrets of this disease. Most people do not realize that it slowly takes over your life. LUPUS takes control, no matter how hard you fight to keep it away.

My mother passed away last year at the age of 53 from Lupus. This disease didn't care how loving and caring she was; it plays no favorites and takes nothing into consideration. It just took over her life, her body, and then took away the most wonderful person in our lives.

There a couple of House Bills in Congress right now, which if passed, will bring more awareness of and education for Systemic Lupus. These Bills will also help to further research in developing better screening tests for Lupus, creating more efective medications, and hopefully one day, finding a cure. I want to encourage everyone to write their Senators and support these House Bills, so that others do NOT have to suffer and lose the fight as my mother did.

I am doing all I can myself to try to make others aware of this disease and what it can do. I want to urge you all to read everything you can find about lupus and then tell a friend about it.

I still fight with this disease daily. I try to tell myself tomorrow is another day and it will be better. Sometimes tomorrow is a little better, but Lupus never goes away. It is with me always, reminding me with its pain, weakness, fatigue, and many other symptoms. The next time someone tells you they have LUPUS, please don't look at them and say, "You look fine to me." Lupus is often an invisible disease, but its damage is being done within, in silence, in secret. You may not be able to see its effects, but that person is probably going through hell on the inside.

So please do what you can and make everyone aware that this disease does exist and it does afflict thousands of people each year. There could be as many as 1.4 million Americans with Lupus, and that does not include the rest of the world.

Thank you for taking the time to read my story.