Why Me? The Courage to Live, written by Deborah Kent, is an amazing story about a very healthy, active, normal 15-year-old girl, Chloe Peterson, who suddenly develops a virus that eventually lands her in the hospital, after she faints at school during a tryout for “The Sound of Music.” Her world is shattered when she is diagnosed with Systemic Lupus Erythatosus (SLE), a chronic inflammatory disease. She fights for her life. Her journey begins when she has to learn to live with this unpredictable disease that steals her energy and leaves her fatigued. Chloe faces social and emotional issues, isolation, concerns about her future –until a nice guy from work, Todd, continues to pursue a relationship with her. This excellent young adult book is about resilience and the courage to live in the face of adversity.
I also wanted to mention that the author, Deborah Kent, was the first totally blind student to attend her local public school. She received her bachelor’s in English from Oberlin College, and a master’s degree from Smith College School of Social Work. Her lifelong dream was to become a writer, and she has written dozens of young adult novels since 1975. She has written a number of young adult books for youth with special needs.
It is difficult to have a chronic disease, especially for children and teens who often feel alone and isolated. You may look normal, but suffer with pain and overwhelming fatigue that no one can see. Friends and classmates don’t understand. There are many issues for teens and young adults. They wonder about relationships, college, careers, marriage, and childbearing. And, there are very few books written for children and teens to help them cope with lupus. Although lupus can be severe and life-threatening, many children and teens with lupus will do very well. And there are periods of remission. It is a disease that leaves parents feeling helpless. It impacts the entire family.
The Lupus Foundation of America, Inc. is an important organization with an informative and educational website about the disease, the symptoms, the diagnosis, treatment, research, resources for parents, videos, and personal stories. The more informed you are about this chronic inflammatory disease that can affect various parts of the body like the skin, joints, blood and organs, the better equipped you are to help and support a loved one or friend. The only children’s picture book I found on lupus is published by the foundation, Loopy Lupus Helps Tell Scott’s Story About a Disease Called Lupus. It is a very unique book written in collaboration with Scott, his mother and family, his third-grade classmates and teacher. It is an excellent book for parents to use with their children and in the classroom. It can be found on the website.
The Lupus Foundation of America collaborated with Lupus UK this year for the first-ever worldwide Lupus Awareness Day, celebrated May 10, although the awareness will run through May. Lupus is a global health problem. And, people of African, Asian, or Hispanic origin have a higher risk of lupus than Caucasians. The actual number of people with lupus is really unknown, however researchers believe at least 5 million people worldwide have lupus. More than 100,000 new cases develop every year. In the United States 1.4 million Americans are affected.
When I learned that it was Lupus Awareness Month, I wanted to write this post because a friend mine has a teenage daughter living with lupus. It has been very difficult for my friend to watch her beautiful, healthy, vibrant and athletic daughter became so debilitated by the disease. She is waiting for a kidney transplant.