Parent's guide book for caring children living with juvenile arthritis

Sep 11 2013

Parents who have children with chronic autoimmune diseases like juvenile arthritis face a lifetime of obstacles and challenges and now there's a book to help them. In Living with Juvenile Arthritis: A Parent's Guide, author Kimberly Poston Miller shares with readers her hard-earned wisdom and experiences as the mother of two children living with juvenile arthritis and a number of related autoimmune conditions.

"[This] is the book I wished I had when my son was first diagnosed. There were many books out there about autoimmune disease or arthritis, but nothing that specifically related to the challenges that we would face as a family, or all the things that JA would affect in my child's life. The book s I found were mostly medical-type publications, which were incredibly helpful, but they addressed the condition, not living with the disease, and that is the part where needed the most help," says the author.

Living with Juvenile Arthritis covers the most important issues and questions parents have, including finding a "new normal," managing pain and disease flares, building a support team, and reclaiming childhood and raising a happy, well-adjusted child.

In the book's foreword, Virginia T. Ladd, founder and executive director of the American Autoimmune Related Diseases Association, Inc. (AARDA), writes,

"Juvenile arthritis (JA) is one of the many autoimmune conditions that are increasing at a rapid rate. Often misunderstood as an "older person's" affliction, or just aches and pains, the general public doesn't always understand that this disease is an autoimmune condition that can affect children from infants to teens.

I've heard it said AD is not common in children. Our experience at AARDA has been quite the opposite. Over the years, we've heard from many parents with children who have been diagnosed with ADs. The problem is there haven't been many epidemiological studies on ADs in children (or adults, for that matter), so there is no accurate tracking of the numbers of kids actually affected. Like adults with ADs, getting a proper diagnosis for a child with an AD can be a frustrating and lengthy process that takes years with many visits to various specialists. Parents of children with ADs also face a unique set of challenges and frustrations. I would say the biggest challenge is overseeing and coordinating their care because, ultimately, this responsibility lies with the parents.

Living with Juvenile Arthritis: A Parent's Guide helps families find their way through this uncharted territory, with solid advice from families who have been there. From actual disease management to ancillary lifestyle changes and situational advice unique to childhood, Kimberly Poston Miller's book will not disappoint parents who are looking for guidance on managing more than the medical portion of their child's disease; it is a guide to healing the whole child and learning to live, and even thrive, under these difficult circumstances.

SOURCE American Autoimmune Related Diseases Association (AARDA)