Why Me? The Courage to Live — Lupus Awareness Month

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.

About Patricia Tiltonhttps://childrensbooksheal.wordpress.comI want "Children's Books Heal" to be a resource for parents, grandparents, teachers and school counselors. My goal is to share books on a wide range of topics that have a healing impact on children who are facing challenges in their lives. If you are looking for good books on grief, autism, visual and hearing impairments, special needs, diversity, bullying, military families and social justice issues, you've come to the right place. I also share books that encourage art, imagination and creativity. I am always searching for those special gems to share with you. If you have a suggestion, please let me know.

10 thoughts on “Why Me? The Courage to Live — Lupus Awareness Month

  1. Very informative, once again, Pat. I had no idea that Caucasians are at less risk for lupus. Have you picked up any more YA books by Deborah Kent? The way she has surmounted her challenges gives her so much authority to write on special needs. ‘Why Me’ sounds very moving. I think you are right that the very hidden nature of many autoimmune diseases is one of their greatest challenges. they are also often not easy to diagnose.

    Pat, so many of these topics you introduce have such a paucity of good books for young children. There is such a need for good children’s book writers to attack some of these difficult topics!

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    • Deborah Kent has written a trilogy of books, this one on lupus, another on diabetes and I’ve forgotten the third. She’s was a social worker for a while before beginning her writing in 1975, and she has written a range of books on a variety of topics. I like her vibrancy. Again, I had a very hard time finding a books for teens and children with lupus. Everything is resources for parents. So, her book was written in 2001. I had purchased the Loopy Lupus book from the Lupus Foundation, but never was able to receive permission to review it or dare use the cover. I only commented it was available and where to get it.

      Autoimmune disease is difficult on adults, but I can’t imagine a child having a disease like lupus his/her entire life. There is a need for good books.

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  2. With a moving title like “Why Me” I would want to know more, so yes I would certainly have picked it up. Deborah Kent sounds like an amazing person herself, as well as being able to handle a topic such as Lupus, is inspiring. Again such little information especially for children is available.

    With the incredible reseach you are doing with each new post and having resources such as friends and family at your fingertips, this is indeed your niche, and I believe many wonderful childrens books to help, educate, heal and inspire many children, are working there way around your keyboard Pat. (I can see Joanna nodding in the background)

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    • Yes, I can see Joanne looking up and nodding too. And, in my comment box, you are looking down at Joanna and nodding. Thanks for your comments — and yes I feel your nudging too. I love your comment “many wonderful children books are working their way around my keyboard.” Very clever. The author is an interesting individual who as a child was very brave and determined to have a full life. That’s why she’s so good. Thank you for noting how much research I do — it’s hard not to go overboard and give you all that I learn — I just have to skim the fact and point the way to the experts.

      For some reason, neither of your messages popped up in my e-mail. So, I was surprised to find two comments.

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  3. I learn so much with each of your posts, Patricia! Your writing is definitely going to be answering a need for books that are accessible to kids that address these subjects, and as Joanna and Diane have already said, we know you’re the one to answer that need.

    It’s so inspiring to read of an author like Kent who has dealt with her own disability in order to pursue her dream of writing. Have I ever mentioned to you the Canadian kid’s book author, Jean Little? Jean is legally blind, and has been writing books for kids for years (and years). I think you’d find some of her books right up your alley, titles such as “From Anna” about a visually-impaired girl, “Mama’s Going to Buy You a Mockingbird”, about a boy dealing with his father’s cancer… Here’s a link to a list of her books (on her website) — http://jeanlittle.ca/index.php?option=com_content&view=section&layout=blog&id=6&Itemid=76

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    • Beth,
      Thank you so much for the information about Jean Little and for sending me the link to her website. I think it’s important to talk about authors who have overcome adversities. They certainly are inspiring. The book I reviewed was one book in a trilogy. I want to read her other books. But, I have been looking for a good book to review on visual impairments. It continues to amaze me as I search for children’s books on specific special needs and illnesses, that I have great difficulty at times. I wrote this message to you ealier, and without thinking reached up an clicked on Little’s link, and lost my message. Bed time. Again, thank you for your comments.

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    • Kimberly, I found the book in the library. Also checked Abe Books online and they have a lot of used copies. My friend’s daughter is 19 and has had lupus for years. That’s why I reviewed the book. It is very hard to find books on the subject for children and so many people (and children) have it. I believe I gave the Lupus Foundation website and they have a children/teen page kids with lupus can participate in. I hope your child is dong okay.

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  4. As one of the coauthors of “Loopy Lupus Helps Tell Scott’s Story About a Disease Called Lupus”, I am so happy to see that the book is providing insights and comfort to children, parents, and friends of those who have Lupus. Thank you, Patricia, for including our book in your post and well wishes to your friend’s daughter. Although Lupus can be an absolutely devastating disease, it is reassuring that there has been recent advancement in medical treatment of Lupus, for the first time since 1955, with a new drug called Benlysta which was released in 2011. This alone feels like a huge step in the right direction in the sense that Lupus is garnering more attention from the medical community. I am still optimistic for an eventual cure and pray that it is on the way. Until then, I hope that our book will continue to serve as an aid for those who are looking for answers.

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    • Heather,
      Thank you so very much for writing. I wanted to review your book, but because the Lupus organization has the book, I wasn’t able to get a copy. All I could do was mention it. Is there a way for me to review it on my blog? I would love to. I’m happy to know of the advances in medicine. But I can not tell you the need for more books on Lupus. Lupus is one of the top searched subjects on my blog. I hope you write and publish more.

      My friend’s daughter did have a kidney transplant last year and is engaged to be married. I am so delighted for her because it was touch and go for a while.

      I have another author friend who is in the last stages of he Lupus, loosing her sight in one eye. She had symptoms now for years, but was only recently diagnosed.

      Again, thank you for contacting me!

      Best,
      Pat

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