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This
is Angelica's Story When Angelica Edwards, 15, and her family visited Philadelphia on June 3-4, 2005 , they were on a mission to learn more about Angelica's kidney condition. Angelica attended the first annual National Nephrotic Syndrome and FSGS Conference, along with over 80 patient-families from 18 different states and four countries, physicians, researchers and other healthcare workers. (Click here for information on the conference.) The conference, which discussed topics related to Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS), was held by The NephCure Foundation. The NephCure Foundation is the only organization solely seeking causes and cures for Nephrotic Syndrome and FSGS. Both can cause kidney damage and may eventually lead the patient to require dialysis or a transplant. The conference also provided teens and young adults the opportunity to share their experiences growing up with the diseases. Angelica, who hopes to be an attorney with the United States Navy one day, first heard of FSGS when she was diagnosed. Doctors later performed a biopsy, revealing the condition. Angelica was 12 years old. “It has been a scary experience,” said Angelica. “What has made this even more difficult is the uncertainty. Not knowing a cause or cure often times makes me feel like I don’t know to expect. I have friends, family and I participate in many activities and while everything seems normal, there is still a black cloud that hangs over my head.” Having FSGS has changed Angelica’s life, and is something she must deal with physically and emotionally. However, she is determined to help raise awareness for her condition. Angelica and her family will hold a letter writing party later this summer to promote awareness of these conditions, as well as, fundraising in her West Park community. “I want a cause and a cure to be realized,” said Angelica, regarding her condition. “I want others to join us as we rescue the dreams that have been put on hold and lost while dealing with this condition.”
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