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.

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.

How Are You Promoting Arthritis Awareness This Month?

More than 46 million Americans have some form of arthritis.  Many people do not know how arthritis affects the individuals who have it, their families and friends, their coworkers, their finances, their health insurance premiums, their quality of life, etc.

What are you doing to promote awareness of this disease that is the leading cause of disability?  This disease that affects more than 300,000 children in the United States?  The toll of arthritis is rising.  We should be educating others about it. 

Since May is Arthritis Awareness month, this is the perfect time to help promote this debilitating disease that has no cure. 

Here are some suggestions on what you can do:

• share your story with someone
• write a letter to your Congressional representative about how arthritis affects you or someone in your family
• write a letter to your Congressional representative supporting the Arthritis Prevention Control & Cure Act
• ask others to write their Congressional representatives
• send in an editorial to your local newspaper
• participate in or volunteer at a local Arthritis Foundation Arthritis Walk
• proudly display your Arthritis Awareness items
• register to be an Arthritis Advocate with the Arthritis Foundation

There are many ways to show your support.  Just choose what suits you best and let us know how you promote Arthritis Awareness!

Are Your Fingers Too Swollen To Hold Hands?

When your arthritic fingers swell, it is often too painful to hold hands with someone else.  So, what do you do when you need to hold a child’s hand when crossing the street or when in a busy, crowded place?  Or what do you do when your loved one wants to hold your hand as a display of affection? 

It really just comes down to what you are comfortable with.  Here are some suggestions.

Holding a Child’s Hand

If you need to hold your child’s (grandchild, nephew, niece, etc.) hand when your hands are in a great deal of pain, then ask the child to hold your arm just above the wrist.  Or have the child hold a piece of your clothing, jacket or purse.  If you are pushing a cart or stroller, you can even have the child hold that.  Praise them when they do it and let them know that they must hold on until you tell them that it is okay to let go.  Once the child (or children) get into the habit of holding something other than your hand, it will be second nature for them. 

Of course, if your hands do not hurt, go ahead and hold their hands to let them know that you still enjoy it.  Children, often times, do not understand why adults do certain things and they may assume you do not love them anymore.  Just be honest and let them know that you would love to hold their hands all day long, but some days it is just too painful.  It may take some time, but they will understand.  Just shower them with love in other ways.  Hugs and kisses work great!

Holding a Loved-One’s Hand

It is common for your spouse, girlfriend, or boyfriend to show their affection for you by holding your hand.  So, if your loved one wants to hold your hand, be honest about how it affects you.  Your loved one should understand.  He/she certainly does not want to inflict pain on you.  After all, the intent was to show their affection for you.

Once you share your concern, it is the perfect time to think of another way to show your mutual affection for each other.  Maybe an arm around the shoulder or around the back.  If you are sitting, maybe place your hand lightly on top of his.  Hugs and kisses work great too!

Good luck!

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.

Get Those Walking Shoes Ready!

It’s that time of year again!  Yes, you heard right.  It’s time to start thinking about the Arthritis Foundation’s 2009 Arthritis Walk. 

Those of you that have participated in the Arthritis Walk know that it is a great time.   For those of you that have not participated in an Arthritis Walk before, take a look at the video below.  It shows what you will encounter at the walk and why the walk is so important.

I really enjoy going to the Arthritis Walk.  You meet other people, children and pets that have arthritis.  You meet their friends and families that are their to support them.  You also meet various vendors that can answer your questions.  In years past, I have seen rheumatologists, chiropractors, representatives from joint replacement companies, health-related companies, animal hospitals, etc.

On top of all that, the Arthritis Foundation has tents for Arthritis Advocacy, general information, a children’s area with fun things to do and educational materials.

The walk is usually held in May in numerous cities nationwide.  Find the location closest to you. 

It only takes a few minutes to register.  If you register now, you have time to start a team, raise some funds and start preparing your body for the walk.

Stay tuned for upcoming posts on preparing for the walk.

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