This I Believe

Susan - Collegeville, Pennsylvania
Entered on June 21, 2007
Age Group: 30 - 50

THIS I BELIEVE: The Unseen is as Real as the Seen

Racing down Interstate 95 at midnight, I had a revelation: I hate my son’s lupus. I was all alone, driving fast to get from my suburban Philadelphia home to my son in Maryland, where he had been hospitalized during his college orientation. The disease that had stolen the carefree fun from his high school years was now threatening to steal his chance at a normal college experience.

Lupus is a chronic disease in which the immune system attacks healthy tissue. The cause is unknown. Because lupus is an INVISIBLE illness, it has been misunderstood by the general public, lawmakers and even healthcare professionals. Just because lupus is invisible, hidden within the person’s own body, does not mean it is not real. Lupus is NOT the figment of the person’s imagination or some hypochondriac’s hysterical delusions. Lupus is a very real, devastating and life-threatening disease. The Wolf comes without warning to steal control over the patient’s body. It leaves that body devastated. Just look at what it has done to my 19-year-old son, Jonathan:

Jon was diagnosed with systemic lupus erythematosus (SLE) when he was 14. The lupus first attacked Jon’s kidneys, skin and blood vessels. One of his most serious flares killed the circulation in Jon’s bones, stealthily deteriorating his hip, knee and ankle joints.

Jon endured knee reconstructive surgery, two hip grafting surgeries and a full hip replacement, in just two years. Now Jon is undergoing liquid cartilage injections in his left knee to stave off a knee replacement.

Jonathan’s story is one of millions. Lupus affects each person that it attacks in a unique way, as individual as the person, with similarities among others as well. Lupus – whose Latin name means “the wolf” — affects more than 1.5 million men, women and children in the United States alone. This number is increasing every year. Although 90 percent of those affected by lupus are women, men get lupus; and up to 10,000 children a year are stricken with this insidious disease.

For me, this is a journey of struggle with powerlessness, trust, and faith. What’s in store for us? I don’t know. I’ve learned not to anticipate. I still struggle with my powerlessness over Jon’s illness. Sometimes, I still wrestle with God for control.

What I know for sure, though, is what I can change: the public’s attitude toward and awareness of this disease, which historically has been careless and lacking.

People die every day from this disease—young people in the prime of their lives: mothers of toddlers, college students, eleven-year-old kids. Do you really think this is a situation that should go unnoticed? This I believe—it is not.

The next time you start to resent a “healthy-looking” person parking with a disability placard/sticker in a spot reserved for the disabled, stop and think. How do you know that person is not disabled?

Remember: the unseen is as real as the seen. Someone you know has lupus, whether you see it or not.

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For more information about lupus and how you can help raise awareness, contact the chapter at www.lupus-sepa.org, 215/517-5070 or The Lupus Foundation of America: www.lupus.org, 1-800-558-0121.

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