Going Back to School with Juvenile Arthritis

It is that time of year again!  Children are going back to school soon or have already started. 

If your child has juvenile arthritis, going to school can be a difficult experience.  Many children, and some teachers, just do not understand the effect juvenile arthritis can have in a school environment.  If that sounds like your child’s situation, check out this book:  Taking Arthritis to School by Dee Dee L. Miller.

This short book is about 32 pages and describes arthritis so children can understand it.  It can be read to classmates to help them understand what their fellow student is going through.  Classmates will also learn that their fellow student is just like them despite having juvenile arthritis.

This book would also be a great way to introduce to your children or young students that people are different in the world.  The sooner we start educating our kids about the differences in people and that being different should not set us apart from everyone else, the better we will be.

Check it out!

Try Warm Whiskers Wraps to Help Relieve Juvenile Arthritis Pain!

Warm Whiskers has a fun line of products that can provide hot or cold therapy to those suffering from arthritis pain and stiffness.  They offer neck wraps, body wraps, slippers and body pillows in various adorable animal-shaped designs.

These aromatic products can be heated in the microwave to provide soothing warmth to sore joints or muscles and can also be frozen to provide cold therapy as well. 

If you’re child has juvenile arthritis, try using Warm Whiskers products instead of a traditional heating pad.  Heating pads are great for adults, but they are difficult to control the temperature.  Warm Whiskers offer a safer method of warming sore little joints.

Kudos to Warm Whiskers for these child-friendly products that offer a solution to serious pain! 

Warm Whiskers gives back too!  Last year, they gave away “Laraby Lab” pillows to 400 children at the 2008 Juvenile Arthritis Conference.  You have to love the smiles on the kids’ faces!

Through March 31, 2010, Warm Whiskers will donate 5% of each sale to the Arthritis Foundation.  Now, that’s a win-win situation!

Whether you have a child with pain or you are a child-at-heart, these Warm Whiskers products are bound to brighten up a sore day!

Take a Few Moments to Read “Poor Liam” by Jack McGlone

I just came across this touching little book on the Arthritis Foundation website.  The book is Poor Liam by Jack McGlone.  It is about Liam, who is diagnosed with arthritis, and is written by his second-grade brother.  It is very fitting since July is Juvenile Arthritis Awareness month.

This book shows that arthritis does not just affect the person who has it, arthritis affects the family and loved ones of the person who has it as well.

Take a few moments to read this touching book. You can read the entire book online at the Arthritis Foundation website.

Kudos to Jack for writing this book about his brother!

Time is Running Out to Support Juvenile Arthritis Registry

The deadline to support the juvenile arthritis registry is quickly approaching.  Comments or letters to the U.S. Food and Drug Administration (FDA) must be received by July 14, 2009.  Have you sent your letter to the FDA yet?

If you have not sent a letter yet or have no earthly idea what I am talking about, see this June 30, 2009 blog post: Contact FDA Now for Juvenile Arthritis Registry!

The Arthritis Foundation makes it easy to send your letter.  They already created a letter of support with all of the pertinent information and you can add your own story or message to it as well. 

I sent in my letter with a personal note that if a juvenile arthritis registry existed when I was diagnosed with JRA almost 3 decades ago, my treatment may have been much different.  Because juvenile arthritis should be treated as quickly as possible to prevent long-term complications, pediatric rheumatologists need as much relevant information as possible to effectively treat patients.

Help the children who have juvenile arthritis or those that may be diagnosed with it in the future.  They need your voice.  Send your letter today!

If you need help with it, let me know.  I am happy to help in any way I can.

Contact FDA Now for Juvenile Arthritis Registry!

The Arthritis Foundation testified recently at the U.S. Food and Drug Administration about the need for a Juvenile Arthritis (JA) Registry.  Now, the Arthritis Foundation and children with juvenile arthritis need your help.

Here is a message I received recently from the Arthritis Foundation:

Contact the FDA Today
JA Registry Needed Now! 
More Info

We need your help! 
 
The Arthritis Foundation has been advocating for many years for the creation of a juvenile arthritis registry. A JA registry would improve the care children with arthritis receive. It would help pediatric rheumatologists make better decisions about the type of medications our children need and it could serve as an early warning system if there are unintended side effects or outcomes of JA therapies. The Arthritis Foundation testified last month at the Food and Drug Administration (FDA) recommending that such a registry be established:  http://www.arthritis.org/murphy.php
 
Now it is your chance to let the FDA know we want them to continue their commendable work in this area and make our dream a reality – the creation of a fully funded JA registry that would help our kids! Click here to learn more, take action and become an advocate!
 
Please personalize your letter with your individual story and feel free to include some or the entire letter which can be downloaded here.  Please submit your comments either by regular mail or email by July 14th to:
Division of Dockets Management
(HFA-305), Food and Drug Administration
5630 Fishers Lane, rm. 1061
Rockville,  MD 20852
Or
Submit electronic comments to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=09000064809306d1
All comments should be identified with:  Docket No. FDA-2009-N-0145

As someone that grew up with juvenile rheumatoid arthritis, I wish that a registry would have been in place.  It may have been a very helpful tool for my pediatric rheumatologists.  Please take a few minutes to contact the FDA now for the children that are affected by arthritis today and in the future.  Be their advocate.

Have You Been Ridiculed for Using Handicapped Parking?

Lets face it…There are many people that use handicap parking spaces who have no medical necessity to use them.  This has made many normal, physically-abled people angry.  Some are so angry that they lash out at people who do not appear to be handicapped or disabled.  Has this happened to you even though you have a legitimate (legal) need to use handicap parking?

It is sad to say that this does happen.  While I’m thankful that some abled individuals are being somewhat protective of the handicap spaces, I am disturbed by those that assume you are perfectly fine and healthy if you do not exhibit physical limitations.  It makes you wonder if their verbal accusations will manifest into a physical nature.

Additionally, young individuals with disabling arthritis are often ridiculed when parking in handicap spaces.  Frequent accusations are that you are using your grandparent’s handicap placard.  Having arthritis at a young age is difficult to say the least.  Who needs someone yelling at them, leaving threatening notes or damaging their vehicle over a parking space?

So, if this has happened to you, I’m sorry.  I have been on the receiving end of this and it makes you lose faith in people and makes you feel worse about your situation.  I’m sure you know what I’m talking about.  Now, you know you cannot educate everyone about why you are using the space, nor should you have to.  But, you can have some fun with it and put a sticker or magnet on your vehicle that makes you feel better.

I came across two bumper stickers that I wish I would have had years ago when I was in this situation.  The first one is “No, I’m NOT too young to park here!“  The other is “No, It’s NOT my Grandma’s placard…it’s MINE!”

I personally do not like a yelling tone, but I think it gets the point across.  Don’t you? 

Maybe the stickers will help.  If not, just know that there are other people out there going through the same thing and we’re here to support you. 

If only we had a superhero that could swoop down and take care of those individuals that ridicule us for something that we have a right to do.  Hmm, maybe RA Guy will make an appearance during one of his adventures and save you!

If you have been the target of ridicule and accusations for using handicap parking, share it with us.  How did you handle it?

Arthritic Hands Don’t Need To Fumble With Neckties Anymore!

According to the Arthritis Foundation, approximately 17 million men have some form of arthritis.  If those men have arthritis in their hands or finger joints, then tying a necktie can be an enormous task.  Asking someone else to put his tie on may be difficult because some of his independence will be lost. 

Instead of fumbling with the necktie or losing some independence, try using a Zipper Tie instead.  Zipper ties have pre-tied knots and allow you to put your tie on in seconds.  Just put the tie on over your head and slide the knot up to the desired location.  That’s it!

Zipper ties are available in various styles.  Whether you are going to church, a special event or work, you are bound to find a zipper tie to suit the occasion.

Zipper ties are also available in boy sizes for boys that have juvenile arthritis.

 

Have a tip on managing life’s daily challenges?  Share it with us.

Looking for a Summer Camp for Your Child?

If you have a child of school age, you are probably inundated with information about summer camps.  But what do you do if your child has arthritis?

Many camps have activities that are just too much for a child with arthritis.  Instead of having your child feel isolated from the “healthy” group of kids at camp, try sending your child to an arthritis camp.

Arthritis camps are for children with arthritis and they have arthritis-friendly activities.  With about 300,000 children in the U.S. diagnosed with juvenile arthritis, your child may not know any other children with the disease (or any chronic disease for that matter).

An arthritis camp is a great way for your child to meet and connect with other kids who have some form of arthritis.  They will know they are not alone and have the support of friends going through the same thing.

 Check out this video about Camp Milagros, an arthritis camp in California:

If you are not sure if there is an arthritis camp close to you or within driving distance, check with your local Arthritis Foundation chapter.  They should know if there are any arthritis camps in the area. 

If there aren’t any camps in your region yet, then this is an opportunity for your Arthritis Foundation chapter to know there is interest in it.  You might even consider volunteering to help get a camp organized.

How Many Pediatric Rheumatologists are in Your Local Area?

originally published 5/28/08

Did you know that Juvenile Arthritis affects approximately 300,000 children in the United States?  Unfortunately, there are not enough pediatric rheumatologists to cover the demand.  It may not affect you as an adult, however, if your child, niece, nephew, friend’s child, neighbor’s child, etc., is one of the 300,000, it will affect them tremendously.  The problem is this: If a child has a form of juvenile arthritis and it goes undiagnosed for a significant period of time, the child may suffer the consequences.  It is very important that children are diagnosed as early as possible so the necessary treatment can begin.  Otherwise, the affected joint(s) may continue to sustain pain, swelling, joint damage, etc.  Later in life, this could lead to deterioration of the affected joint, which affects quality of life and may well lead to joint replacement, joint fusion or some other type of significant treatment.

How do I know this?  I was one of those children back in the 70’s.  For as long as I can remember, I have had joint pain, swelling, tenderness, etc.  In those days, if you went to the family doctor or emergency room, you were told that it was probably just a sprain.  For years, this occurred until I finally saw a pediatric rheumatologist who diagnosed me with Juvenile Rheumatoid Arthritis (JRA).  The problem is that it was undiagnosed for eleven years.  By then, significant damage had already occurred in the ankle joint.  I could keep telling my long story, but to get to the point, I had to have a total ankle replacement at the age of 30.  It was a long time coming, but that is an early age to have a joint replacement.

My point is that children need to be diagnosed early to help prevent significant problems down the road.  Will it prevent significant problems by 100%?  Surely not, but we owe it to our children and the children of this nation to help provide them the best care they can get. 

How can you help?  It’s easy!  Support the Arthritis Prevention Control and Cure Act.  It calls for more pediatric rheumatologists among other necessities.  The Arthritis Foundation makes it simple to show your support.  Just go to the Arthritis Foundation’s Arthritis Action Center and enter your zip code in the “Find Your Officials” box.  The resulting page will show your officials and will have an “Action Alert” box.  Just follow the links from that point on.

Just for kicks, try searching for a pediatric rheumatologist in your area.  You’ll probably be surprised to see that they are few and far between.  About a month ago, I checked for pediatric rheumatologists in Kentucky.  Unfortunately, I only found two full-time pediatric rheumatologists and they are both in Louisville.  The really sad thing about this is that Kentucky is the second-highest state for the prevalence of arthritis.  In other words, the Kentucky population has a higher percentage of arthritis than most of the other states.  However, we only have two full-time pediatric rheumatologists to serve the children with arthritis and many of those children will have to travel hours just to see the doctor.  Pretty sad if you ask me.