HONORING JUVENILE ARTHRITIS AWARENESS AND INDEPENDENCE

If you are reading this, you are likely old enough to be experiencing the aches and discomforts we attribute to “maturity.” Your knees may be a bit stiff after a long car ride. When you get out of bed in the morning, you need some time to “work the kinks out” of your body. You may recall a vacation with Grandpa when you were about eight years old, overhearing him refer to an unhappy visit from Arthur Itis, and wondering why Grandpa just didn’t insist Arthur stay away! Or maybe you are an adult who battles a serious illness or has experienced a significant injury and can hardly remember not living with pain.

In any event, we often think longingly of our youth, when we felt invincible and took little notice of our physical condition. There are, however, children and teens dealing daily with symptoms we typically associate with aging bodies. We recognize these young people in July, which is National Juvenile Arthritis Awareness Month.

According to the American College of Rheumatology, approximately one child in one thousand develops some type of chronic arthritis, and an estimated 300,000 American children have been diagnosed with the condition. Most importantly, their “Fast Facts” report the disease is treatable and “in spite of their diagnosis, most children with arthritis can expect to live normal lives.”

The National Institute of Arthritis and Musculoskeletal and Skin Diseases explains what juvenile arthritis is fairly simply:

Arthritis is a condition that can cause pain in your joints, the places in your body where two bones meet, like elbows, shoulders, and knees. Juvenile arthritis describes a group of conditions in children that involves joint pain, swelling, tenderness, warmth, and stiffness. Most forms of juvenile arthritis are autoimmune disorders, which means that the body’s immune system – which normally helps to fight off bacteria or viruses – mistakenly attacks some of its own healthy cells and tissues.

The Centers for Disease Control and Prevention points out that childhood arthritis can affect children of all ages, races, and ethnic backgrounds. There is no cure, but some children experience permanent remission: the disease is no longer active, but any physical damage to the joint remains. Symptoms in addition to those listed above include fever, rash, fatigue, loss of appetite, eye inflammation, and difficulty with activities like walking, dressing, and playing.

According to the Arthritis Foundation,

• Juvenile idiopathic arthritis (JIA) is the most common form of childhood arthritis, and includes six subtypes.
• Juvenile dermatomyositis is an inflammatory disease that causes muscle weakness and a skin rash on the eyelids and knuckles.
• Juvenile lupus is an autoimmune disease that can affect the joints, skin, kidneys, blood, and other parts of the body.
• Juvenile scleroderma describes a group of conditions that can cause the skin to tighten and harden.
• Kawasaki disease causes blood vessel inflammation that can lead to heart complications.
• Mixed connective tissue disease can include features of arthritis, lupus dermatomyositis and scleroderma, and is associated with very high levels of an antinuclear antibody called anti-RNP.
• Fibromyalgia, a chronic pain syndrome, is arthritis-related and causes stiffness and aching, fatigue, and disrupted sleep. It is more common in females and seldom diagnosed before puberty.

Johns Hopkins Medicine (JHM) defines the most common form, JIA, as affecting “one or more joints for at least six weeks in a child age sixteen or younger.” JIA’s subtypes are described as follows:

• Systemic onset JIA is the least common and affects one or more joints in one in ten to about one in seven children with JIA. It often produces a high fever and skin rash, and may also cause inflammation of the heart, liver, spleen and lymph nodes.
• Oligoarticular JIA affects one to four joints in the first six months of the disease. It is called persistent if no more joints are affected after six months; extended if more joints are affected after six months.
• Polyarticular JIA affects five or more joints in the first six months of the disease. With this type, blood tests for rheumatoid factor (RF) determine if this type is RF-positive or RF-negative.
• Enthesitis-related JIA includes swelling of the tissue where bone meets a tendon or ligament and often affects the hips, knees, and feet.
• Psoriatic arthritis is the type where a child may have arthritis and a red, scaly skin disease called psoriasis or arthritis and two or more of the following: inflammation of a finger or toe; pits or ridges in fingernails; a first-degree relative with psoriasis.
• Undifferentiated arthritis has symptoms of two or more JIA types or the symptoms might not match any type of JIA.

JHM cautions that diagnosing JIA may be difficult because there is no single test to confirm the disease; rather, it is based on symptoms of inflammation that have occurred for six weeks or more. A child’s healthcare provider will elicit a health history and conduct a physical exam and may request blood tests, imaging tests (to determine damage to bones), urine tests (to determine kidney function), joint aspiration, and a full eye exam by an ophthalmologist.

Treatment for JIA, reports the Mayo Clinic, concentrates on helping a child “maintain a normal level of physical and social activity” and may incorporate a combination of strategies.

• Medications, including nonsteroidal anti-inflammatory drugs like ibuprofen (Advil, Motrin) and Aleve; disease-modifying antirheumatic drugs; biologic agents; and corticosteroids.
• Physical and occupational therapy that helps maintain joint flexibility, range of motion, and muscle tone. Physical and occupational therapists may make recommendations regarding the best exercises and protective equipment for the JIA patient and may also provide counsel on joint supports or splints.
• Surgery may be required to improve joint function in severe cases.

A child’s caregivers can also teach “self-care techniques” that mitigate the effects of JIA.

• Regular exercise. Swimming is excellent because it stresses joints minimally.
• Applying cold or heat packs.
• Eating well to help maintain an appropriate body weight. Adequate calcium is critical because children with JIA are at risk of developing weak bones.

And, of course, family members are essential in helping children with JIA manage the disease optimally.

• As much as possible, treat the child with JIA like other children in the family.
• Allow the child to express anger about having the condition, and explain it isn’t caused by anything s/he did.
• Encourage participation in the physical activities recommended by medical providers.
• Discuss the child’s condition with teachers and administrators at school.

The American College of Rheumatology advocates a pediatric rheumatology team – pediatric rheumatologist, physical and occupational therapist, social worker, and nurse specialist -- to manage the needs of a juvenile arthritis patient and patient’s family most effectively. Panhandle Home Health’s licensed and certified staff includes everybody but the pediatric rheumatologist. We are also happy to have on our staff a registered dietician who is experienced in developing meal plans that are both pleasing to a child and health-enhancing.

All of us have limitations and face challenges. Frequently they are health-related. As Americans, in July we celebrate independence: overcoming and thriving. Panhandle Home Health would be honored to help facilitate independence for your loved one of any age. Contact us at 304-263-5680 for more information on the services that would help your loved one.

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