Leading the way to a cure

Lupus Research Update: 2011 Volume 3

Volume 1, 2011 - Online Edition | In This Issue

Grasping an Understanding of Lupus in Children >
Pediatric Specialists offer Insights into Treating Lupus >
Faces of Lupus: A Mother’s Perspective >
New Technology Offers New Hope >
The ALR Announces New TIL Grantees >
Lupus News Corner >

Faces of Lupus: A Mother’s Perspective, by Rose Cocchiarella

Maddy was diagnosed with lupus when she was just 12 and 1/2 years old. As with many girls that age, a lot of positive things were happening. She was doing wonderfully well in school … becoming a skilled field hockey player … and looking forward to her graduation dinner dance — a rite of passage for any 8th grader.

Suddenly everything changed. Maddy became ill on a family trip. Then we were blindsided by our pediatrican's diagnosis: Lupus!

We wondered how we were going to cope, stay positive, and try to make life normal for Maddy and her older brother, Vincent.

And Joe and I worried about the ill effects from the sun and fluorescent lighting in school, the exhaustion, and the side effects of corticosteroid treatment.

Then, we had to deal with the physical side effects. Her hair had thinned and she was gaining weight fast. Imagine gaining 30 pounds in a month!

Maddy hit a valley last year in her junior year of high school after a year of worsening symptoms. A kidney biopsy revealed serious damage. Treatment with extremely high doses of steroids and cisplatinum was recommended. Every day was an emotional rollercoaster for all of us.

My daughter had to quit field hockey, miss school, and have toxic IV treatments. I kept asking myself: “What’s next?”

Then Joe told me about ALR ... and how it funds new research to provide answers to lupus. It was good to hear that something bigger than us is fighting to lessen our daughter’s suffering.

ALR has become important for our family. We are proud to belong to an organization that enables every dollar we raise to fund research, expand treatment options, and end this roller-coaster ride. I am proud to say we have been participators in Walk with Us to Cure Lupus since 2006 and have raised almost $60 thousand for the ALR!

As my husband says, “We will walk every year until we don’t have to do this anymore.”

1.5 million

people in the U.S. have Lupus.

172 million

dollars committed to lupus research by the Lupus Research Alliance.

We're walking across the United States to raise awareness and funds for lupus research.


Show your support by visiting the Lupus Research Alliance online store. Discover the perfect gift, or prepare for a walk with our selection of apparel and accessories.

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