Last month I shared with you an update on my daughter’s juvenile arthritis. Her ninja-like immune system is back at it and we’ve started a new medication. So far so good!
One of the reasons I write about my daughter’s illness is awareness. People tend to know very little about this disease that affects over 300,000 children in the US alone. And because of my posts on juvenile arthritis, I have gotten many emails from parents with a child who has just been diagnosed with juvenile arthritis. I am able to help those parents by providing them with resources and support to help ease them into their new normal.
One thing that was a bit lacking when my daughter was diagnosed was resources. Obviously I googled the crap out of “juvenile arthritis” but I got a lot of the same stuff. When you have a child who is struggling with something, you typically want to basically read and learn every possible thing you can about it and you want to talk to parents of children dealing with the same thing.
You want information. You want support. You want hope.
My friend Kim also noticed this lack of information out there for the parents of children with juvenile arthritis. She is the parent of not one butÂ two children with juvenile arthritis. Both her handsome boys struggle with different types of this disease and she was frustrated with the lack of information out there. So she did what any reasonable person would do.
She wrote a book!
In fact, she wrote a great book.
(Disclosure: Â I received this book at no cost in exchange for my review. All opinions are mine. There are affiliate links to Amazon for your connivence)
Finally, a Book on Juvenile Arthritis!
Living with Juvenile Arthritis: A Parent’s GuideÂ by Kimberly Poston Miller is a fantastic book aimed at parents of children with JA. Kim weaves her own experiences of dealing with her sons’ illnesses with stories from other parents from all over the world, providing the reader with a plethora of insight into the world of parenting a child with juvenile arthritis. From managing flares and pain, doctors visits, and hospital stays to managing home life, school life and finding a “new normal,” Kim covers the topics that every parent with JA needs to know in a well organized and easy read format.
Though the information in this book is wonderful, insightful, and much needed, what I really loved about this book wasÂ how Kim presented the information.Â You see, Kim’s husband was an NFL player. Their family lived and breathed football for many years, and Kim used this part of her life as a framework for this book. Comparing life with chronic illness to the game of football was not only witty butÂ kinda brilliant.
At the Juvenile Arthritis conference this year, the parents were separated into moms and dads groups at the beginning and end of the conference. At the end, Â my friend Katy who was running the mother’s group asked us to share what we learned and what we found the most valuable during the 4 days.
Woman after woman stood up and expressed howÂ happy they were that their husbands were “getting it” and finally talking about it.Â
“It” being juvenile arthritis. “It” being that their child had a chronic illness.
Men tend to deal with things a bit differently than women. They tend to not talk about things as much and seem to rely a lot on their wives to do the research. They don’t often read the research, the books, and from what I’ve heard, rarely go to doctors appointments (my husband is an exception…he has been to all but maybe three of my daughter’s rheumatology appointments the last three years. Those three appointments he missed only because we now have a clinic close to our home rather than close to his work.) This means the mothers can feel alone and overwhelmed. At the conference however, the dad’s were learning more about JA and meeting families that could relate and the experience really helped bring these families together.
I think that Kim’s book could do something similar for families living with JA. Kim has written a bookÂ that is perfect for men.Â I mean….A book that compares living with JA to football?
Touchdown! A book both men and women can relate to!Â
It’s not Just for Parents
This book isn’t just for parents. As I read through this book, I thoughtÂ every pediatrician, family physician, and orthopedist needs to read this book. Why? because these are the three types of doctors who most often come in contact with children with JA. Not only will this book give them an idea of what life is like for these families, but reading this book should also force them to keep JA in the back of their minds when kids come to them with JA-like symptoms. JA unfortunately can take a long time to get diagnosed due to doctors being poorly educated about this disease.
In addition, I think it is very important for physical therapists and occupational therapists to read this book as most kids with JA undergo one if not both of these therapies at some point during their lives (E went through physical and occupational therapies in 2011). Understanding what these kids and families go through will only make you that much better a therapist!
I loved this book, and let me summarize why:
- It was well written and easy to read.
- The personal stories: These are honestly the best. Reading about how other families are affected by a scary disease your child has gives you a kind of peace andÂ reminds you that you are not alone.
- The information was relevant, helpful andÂ useful. Kim provides lots of simple tips about handling this disease that you may not ever have thought of. One tip is keeping a notebook to keep notes in at all the doctors appts…simple yet brilliant tip to keep things all together!
- Resources: Kim provides a TON of resources in this book to help educate and connect families dealing with juvenile arthritis.
- There is something for everyone. Whether you have been dealing with JA for years or arebrand new to this game, you will walk away with something helpful.
- Great for pediatric rheumatologists, pediatricians, family physicians and orthopedists (PTs and OTs too!) as it gives a good overview of what families dealing with juvenile arthritis go through.
Where Can You get a Copy? How Can You Learn More?
You can pick up a copy ofÂ Living with Juvenile Arthritis: A Parent’s GuideÂ at Amazon! Looking to learn more? Check out Kim’s great blog: Living with Juvenile Arthritis: Learning to Thrive not just Survive with JA. She has a lot of practical information for families of children living with chronic illness. Make sure to like her Facebook Page too to keep up to date!
Win Your Own Copy of Living with Juvenile Arthritis: A Parent’s Guide!
If you have a child with JA or work with children that do, you can win your own copy! Here are TWO chances to win!
You can enter for a chance to read at Goodreads through October 31st. 10 copies are being geiven away for US residents only.
You can also enter to win a copy by linking the Living with Juvenile Arthritis Facebook page and entering the rafflecopter. This is open toÂ international entrants!Â
Now You Tell Me….
Do YOU have a child with juvenile arthritis? If so, tell me one piece of advice YOU would give to families just being diagnosed.
If you do NOT have a child with JA…tell me, did you know about JA before reading my blog? I’d love to hear about YOUR experiences with JA or lack there of.
Mike R. says
On last month’s blog post, someone in the comments asked if you’ve tried/looked into the dietary alternatives (e.g. no-dairy diet, gluten-free diets, etc.) Would love to hear your opinion or if you’ve entertained these ‘treatments’, because you’re definitely right… “There is such scattered information online and you never know what to believe. Many doctors simply are uninformed as well, which makes diagnosis and treatment that much more complicated.” This leaves many parents confused on the onset of knowing their child has jia/jra, myself included. Thanks Katie, praying for the best for both our little girls.
Mike, I have been looking into dietary alternatives and will be posting about them actually. I am currently a little obsessed with food right now! Ha!
Jessica Wood says
Conversation started today
Jessica Proud Mummy Wood
Jessica Proud Mummy Wood
My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn’t even three years old.
I remember feeling so alone after diagnosis. I didn’t know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital.
One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn’t much where I could discuss things with other people going through the same things.
I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.
So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.
I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren’t alone and that there were many other people going through the same thing.
The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn’t just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.
I was wondering if you could please share these links for us so that other parents in our situation could find us.