An eight-year-old girl talks about what her life is like with the disease of JRA or juvenile rheumatoid arthritis. This description may be from another edition of this product.
So I’m biased because I personally know Nikki. We were campers and friends at our local JA camp.
When I first met Nikki, she often needed to use a wheelchair at camp granted Southern California up in the mountains. Rough terrain
She is absolutely hilarious and the book is very accurate.
When I became a camp counselor, I often used her social abilities, openness and experiences by urging her to talk to the kids well young teens who were struggling with new dx or very active disease. She did marvelously
Unfortunately I lost touch with her but I was still going to camp when our first biologic Enbrel came out and it was miraculous for her. Calmed sJIA (before sJRA) down and she had loads of energy. Got to the point where she didn’t have to do the shot every week.
The last time we spoke, she had graduated from high school and called me sharing she was moving I think up north to attend university.
Such a great book that truly represents the real experiences of JRA/JIA and anyone who reads my comment will hopefully like knowing some of the background.
I’m smiling as I write this because she’s so funny and although Im years older than her, she would make me laugh soo much up at camp. Mischievous and so open to raise awareness too.
I have this book and think about selling it just bc some kids who were like me feeling alone would probably benefit from the book.
I was blessed to meet a peer with JIA at age 16 in my high school. Fortunately in my high school years on, we got a great peds rheumy and very active AF chapter so I’ve met thousands of people/families in national JA conventions, camp, facilitated a support group for teens, etc. I know most of us kids … it’s still relatively rare to meet others with it. Plus hardly anyone knows kids get it. Just looking at the fact there are books here on tgis site and this is the first of 5, I viewed with any comments or stars.
Take care JA warriors … you aren’t alone!
Recommended reading re: JRA
Published by Thriftbooks.com User , 22 years ago
It's nice, simple reading for all. As one of the only autobiographies by a person with JRA, Nicole's Story is a nice resource for understanding, sympathizing, and empathizing if you have JRA. My daughter has JRA and I'm sure she'll be glad to have this book so she can see that she is not alone. I think I'll share it with her teachers and classmates too.
A Must Have for any family with a child with arthritis
Published by Thriftbooks.com User , 23 years ago
This pictorial book of a real life story of Nicole, a little girl with arthritis kept my children's attention. My daughter has juvenile rheumatoid arthritis and this book helped her to see she is not alone in her struggles. She can easily relate to Nicole. I also gave this book to both my children's teachers for their classroom collection. It explains alot about JRA as well as making it 'acceptable'. They found it to be informative as well as touching.
Great Message
Published by Thriftbooks.com User , 23 years ago
This book sends out a great message to young people stricken down with this painful disease. I was diagnosed with JRA when I was fourteen, and I'm 15 now. Thing is, we aren't stricken down. With the help of medical science and power of God, we'll always find a way to live through yet another day that drags on to feel like an eternity. This is a book every JRA-RA patient should read, young or adult. My love and prayers go out to Nicole and her family, plus all the rest of us with this formerly "crippling" disease. But there's hope if you catch it soon enough. I had it for months before we got a diagnosis. Goodbye and God Bless
Wonderful
Published by Thriftbooks.com User , 25 years ago
I rate this book very high because I have the same disease and I'm 12 and it's amazing that she goes through the same things
Great Job Nicole. A great gift for any child or parent.
Published by Thriftbooks.com User , 25 years ago
Great book! I recommend this book for parents as well as teachers and medical professionals who work with patients suffering from JRA. I've had JRA for 17 years and was finally diagnosed at age 16, after two years of symptoms and suffering from the crippling RA pain. The list of resources in this book will help any parent or patient work out problems they may encounter living with this disease. As an author it's great to see, and use a book that takes JRA seriously from a child's point of view. I've resourced many books written by medical professionals that lecture patients on how to cope. But Nicole's Story goes the the heart of what all of us living, coping, and surviving with RA and JRA experience on a daily basis. And I plan to use it in all my support groups for kids and teen living with JRA. Nicole's Story will help discard the myth that Arthritis is just "an old person's disease." Kids coping with JRA have now found a voice. I hope more people will take the time to listen. Bravo Nicole!
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