Tuesday, July 28, 2009

July is National Juvenile Arthritis Month

If you are reading on this site you know...I'm a parent with a child diagnosed w/ Juvenile Dermatomyositits - a rare form in the juvenile arthritis family of diseases. I came across this information online and wanted to share with anymore who may not know how many children are affected by arthritis. On my site, I have a firstgiving block. If you feel compelled to make a donation to Cure JM - the organization my daughter's disease is most associated with - please do so. And thanks...

When we are becoming parents, our one wish is that we have happy, healthy children and that no harm comes to them. Imagine if your child were living with pain every single day of their lives. This pain can be controlled but not eradicated. There is no way to prevent it and no cure- only hope to keep the progression to a minimum and the child in as little pain as possible. Can you imagine how you would feel? I know how it feels...it's the absolute worst feeling possible.

July is National Juvenile Arthritis Month. Facts from the Arthritis Foundation:
Juvenile arthritis (JA) refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Impact of Juvenile Arthritis: Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions. Juvenile arthritis is one of the most common childhood diseases in the United States. Common Symptoms of Juvenile Arthritis: Pain, swelling, tenderness and stiffness of joints, causing limited range of motion• Joint contracture, which results from holding a painful joint in a flexed position for an extended period• Damage to joint cartilage and bone leading to joint deformity and impaired use of the joint• Altered growth of bone and joints leading to short statureTypes of Juvenile Arthritis:• Polyarticular JA affects five or more joints and affects girls more frequently than boys, most commonly affects knees, wrists and ankles can affect weight-bearing and other joints, including hips, neck, shoulders and often affects the same joint on both sides of the body• Pauciarticular JA affects four or fewer joints and usually affects the large joints: knees, ankles or wrists often affects a joint on one side of the body only, particularly the knee may cause eye inflammation (uveitis) which is seen most frequently in young girls with positive anti-nuclear antibodies (ANA)• Systemic Onset JA can affect boys and girls equally cause high, spiking fevers of 103 degrees or higher, lasting for weeks or even months cause a rash consisting of pale, red spots on the child’s chest, thighs and sometimes other parts of the body; cause arthritis in the small joints of the hands, wrists, knees and ankles. Other Types of Juvenile Arthritis:• Juvenile Spondyloarthropies (ankylosing spondylitis, seronegative enthesopathy andarthropathy syndrome) are a group of diseases that involve the spine and joints of the lower extremities, most commonly the hips and knees.• Juvenile Psoriatic Arthritis is a type of arthritis affecting both girls and boys that occurs in association with the skin condition psoriasis.• Juvenile Dermatomyositis is an inflammatory disease that causes muscle weakness and a characteristic skin rash on the eyelids and other areas such as knees, ankles, elbows, wrists, chest and hands.• Juvenile Systemic Lupus Erythematosus is an autoimmune disease associated with skin rashes, arthritis, pleurisy, kidney disease and neurologic movement.• Juvenile Vasculitis is an inflammation of the blood vessels and can be both a primary childhood disease and a feature of other syndromes, including dermatomyositis and systemic lupus erythematosus.

Causes of Juvenile Arthritis:
The cause of most forms of juvenile arthritis is unknown, but it is not contagious and there is no evidence that foods, toxins, allergies or vitamin deficiencies play a role. The primary goals of treatment for juvenile arthritis are to control inflammation, relieve pain, prevent joint damage and maximize functional abilities.

How does the Arthritis Foundation help?The Arthritis Foundation supports research, health education and government advocacy efforts to improve the lives of the nearly 46 million Americans with arthritis, one of the nation’s most common causes of disability. Check them out at www.arthritis.org.

As mentioned earlier, another organization closer to my daughter's disease is Cure JM. They are also doing great things. Check them out at www.curejm.com. Today, I ask for you to take a moment to give thanks for the healthy children or grandchildren in your life and then check out these sites to learn a little more about these debilitating diseases that affect so very many children.

3 comments:

WonderMom??? said...

God Bless you! Your blog is so discriptive. Thank you so much. This is such a rare condition. I have a daughter who has Pauciarticular JRA but recently has started with wierd rashes we did blood work and so far we do not have JMD. My husband is only 28 and has always had rashes but just now has started to have hip and shoulder pain I did get his doctor to test. You are such a great mom and you really have done a great job sharing your story and I know others will appreciate it as well. I have google alerts set up so I get all the new post on JRA set to me via e-mail. I am so glad I got this one. Do you ever attend the National JRA conferences?

Thanks, Michelle

Summer said...

Your family is in our prayers! I am 31 and was recently diagnosed with DM, RA, and Lupus. I go to the Myocitis Clinic at John Hopkins and am currently on chemo type meds. If you would like to pop over to my blog you can see alot about this rare condition. I have a miracle baby who is now 2 1/2. This all surfaced after I had her. Your daughter is so beautiful. Hang in there... This stuff will get in remission... it is just a big fight to get there...
Summer

Summer said...

Bless you and your beautiful daughter. My good friend found this site for me. Her daughter has JRA and I was recently diagnosed with DM,RA, and Lupus after the birth of my 2 1/2 year old miracle baby. I am now a follower of your blog, and wish you well. I currently go to the John Hopkins Myocitis Center and am on all kinds of Chemo like drugs to kick this into remission... Pop over to my site and you will find alot of info on DM.
Summer