DEL.ICIO.USLupus walk helps family deal with loss
Raising disease awareness and funding helps relatives honor lost loved one
The Atlanta Journal-Constitution
Friday, October 24, 2008
Kimberly Strong will drink plenty of water, grab a banana and lace up her running shoes to physically prepare for Saturday’s ALR Lupus Walk. But no routine will help her prepare emotionally for the event. The 5th annual walk will be the first she attends following the loss of her sister and roommate, Carla, who died last year from complications of the disease.
“Because she was my only sibling, I feel a little lost,” said Strong, 30, who anticipates feeling a wide range of emotions Saturday, including pride about the many lives her sister touched. “You really want to take your time to grieve and move forward; but for me, that means finding a cure.”
Courtesy of Kimberly Strong
Carla Strong raised awareness and funding for lupus before succumbing to the disease last year.
Courtesy of Kimberly Strong
Carla’s sister Kimberly participated in the 2005 Walk for Lupus …
Courtesy of Kimberly Strong
… as well as the 2006 walk. Kimberly says that her family will continue efforts to increase awareness and funding of lupus research.
ALR Lupus Walk
A 5-kilometer fund-raising walk. Saturday; 9 a.m. registration, 10 a.m. start. Free registration; participants should bring any donations raised to the walk. Highwoods Century Center, 1700 Century Blvd., Atlanta. 917-572-6790; www.lupusresearch.org
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While Strong and her family have continued efforts to increase awareness and funding of lupus research, many families find such activities too emotionally draining after a loved one succumbs to the disease. According to the Alliance for Lupus Research, which conducts the annual walks in several major cities throughout the country, participation by Southeast region families who lost a loved to the disease declined by 50 percent over the past two years.
“My hat goes off to these families who are fighting strong and raising money despite their loved ones who have passed on,” said Mark Roberts, regional fund-raising manager of the Alliance. He admits that his own family ceased participating in breast cancer awareness events following the passing of his mother-in-law in 1999.
Continuing their support, the Strong family members say, helps them work through their grief and channel their energy in a positive manner. It also helps them remain connected to Carla, said Kimberly Strong.
“We don’t want to fall off the grid just because we lost our fight,” she said.
Elsie Strong agreed with her daughter.
“I just want to wipe out lupus,” said the Decatur resident. “I’m mad at lupus, and this is a way for me to continue what she started.”
Carla Strong was first diagnosed with the autoimmune disease in 1997, about a year after experiencing a flare — an episode of psychosis and various infections.
Since lupus causes the immune system to attack the body’s organs, cells and tissues, Carla battled daily with swelling, fatigue and stiffness. Two severe bouts with shingles left large scarring on her arms and back, and arthritis caused a deformity in her fingers, leaving her unable to open jars and press buttons. Her right shoulder became so weak that she could not lift her arm very high, and the shoulder bone drooped. Her hip bones deteriorated and she received a double hip replacement before she turned 35.
Carla took 11 medications, including ones for pain, blood pressure and to regulate her thyroid, and was hospitalized up to three times a year, staying from three to seven days each time. In September 2006, she developed an infection and remained in the hospital for a month, missing the annual walk.
Although the disease sapped her of energy and strength, Carla worked tirelessly to increase awareness about lupus. She collected donations from family and friends by e-mail and letter campaigns, and after last year’s walk, she vowed to take over as team captain to increase the donations.
In December, though, severe headaches brought her back to the hospital, where days later she developed severe chills, chest pain and difficulty breathing. Her blood pressure dropped and she died on Dec. 15, shortly after turning 39.
“All the things that she might’ve done, I’m going to step in and do,” Kimberly Strong said of advocating for lupus research; she already has spoken on Capitol Hill on her sister’s behalf. She hopes to increase funding of genetic testing and new drugs and improve the lives of people suffering with lupus.
Ultimately, Strong said, she will feel better when there is a cure.
WHAT IS LUPUS?
- An autoimmune disease that causes the body’s immune system to attack against its cells, tissues and organs, including the heart, lungs, joints, nervous system and brain.
- About 1.4 million people suffer from Lupus.
- It is three times more common in African-American women than Caucasian women.
- More than a third of deaths from lupus occur between the ages of 15 and 44.
- Women die from lupus at five times the rate of men.
Source: Alliance for Lupus Research
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