July - Juvenile Arthritis Awareness
July: Juvenile Arthritis Awareness
It is estimated that in the US there are approximately 300,000 children who are diagnosed with Juvenile Arthritis. However Juvenile Arthritis is actually an umbrella term for a number of childhood diseases affecting the joints and musculoskeletal system. And although these diseases share many common symptoms, like pain, joint swelling, redness and warmth, they are distinct and each have their own special concerns and symptoms.
- Juvenile Idiopathic Arthritis (JIA)
- Considered the most common form of arthritis, juvenile idiopathic arthritis (JIA) begins before age 16 and involves swelling in one or more joints lasting at least six weeks. JIA, which includes several types of arthritis previously known as juvenile rheumatoid arthritis (JRA), may include a variety of symptoms, such as muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns.
- Juvenile dermatomyositis
- An inflammatory disease which causes muscle weakness and a skin rash on the eyelids and knuckles. Roughly one in five children also have arthritis, but it’s likely to be mild. The disease can result in muscle weakness in the trunk, shoulders and upper legs thus potentially limiting running, climbing stairs and other activities.
- Juvenile lupus
- Lupus is a disease of the immune system; the most common form is systemic lupus erythematosus, or SLE. Adults are diagnosed more often than children and the disease is far more common in women. Lupus can affect the joints, skin, kidneys, blood and other areas of the body. Symptoms may include a butterfly-shaped rash that bridges the nose and the cheeks, a scaly-type rash on the face or neck, sensitivity to sunlight, pain in the joints and chest pain.
- Juvenile scleroderma
- Scleroderma, which literally means “hard skin,” describes a group of conditions that causes the skin to tighten and harden. There are two basic forms, one of which affects the entire body, and one that is localized – primarily a skin disease – and occurs more commonly in children. Skin changes resulting from localized disease can occur anywhere, from the face, to the arms and legs or trunk. The more widespread, systemic form, which targets internal organs, tends to affect the skin of the fingers, hands, forearms and face, and more frequently seen in women.
- Kawasaki disease
- A Japanese pediatrician named Tomisaku Kawasaki discovered common patterns in a group of children – inflammatory-type symptoms followed in later years by heart complications. The disease, which primarily affects infants and young children, frequently starts with a high fever. Other changes may include a visible rash or a swelling or redness around the hands or feet, followed a few weeks later by peeling around the fingers and toes. Although arthritis can occur, the most serious concern is inflammation of the blood vessels themselves; careful monitoring for heart complications is necessary.
- Mixed connective tissue disease
- This disease may include features of arthritis, lupus dermatomyositis and scleroderma, and is associated with very high levels of a particular antinuclear antibody (anti-RNP). Of course, there are a number of other non-inflammatory causes of pain and stiffness, sometimes chronic, in children.
- This chronic pain syndrome is an arthritis-related condition, which can cause stiffness and aching, along with fatigue, disrupted sleep and other symptoms. More common in girls, fibromyalgia is seldom diagnosed before puberty.
Children who have been diagnosed with Juvenile Arthritis do not just suffer from joint pain, and care plans should take a holistic view of life with a chronic limiting condition.
- Children with JA may result in having reduced growth due to reduced nutritional intake – factors such as pain and nausea from the condition, difficulty cutting up or accessing food from reduced fine motor skills, and side effects from medication can all mean they may not achieve their required daily nutritional intake.
- It is vital that teachers at school understand the child’s abilities so as they do not ask them to do something that is going to cause them further harm or distress. A 504 plan is a legal document that lists the accommodations that a child needs at school, such as not being required to participate in PE. Children who have long term health conditions may be victims of bullying behaviour and this may affect their mental health. Parents can request that one of these is completed for their child, but may still feel like they have to ensure that their child’s care needs are communicated through the school to the appropriate staff.
- Pain and limited movement can lead to children with JA not getting enough moderate to vigorous physical activity, which could lead to issues with bone density. Please read the educational article below.
For more information on Juvenile Arthritis, please visit the Arthritis Foundation’s website which is dedicated to Juvenile Arthritis: www.kidsgetarthritistoo.org Here, patients and their families, as well as schools, can find a wealth of information on managing daily life with Juvenile Arthritis, transitioning into managing their own condition as they get older, and information on organised events such as camps, fundraising galas and support groups.
Please read the research article below taken from our literature database which explores the activity levels of children with JIA in Ireland: https://web.a.ebscohost.com/ehost/pdfviewer/pdfviewer?vid=8&sid=8b9e1912-e601-41a1-a67d-99a81ba21dc3%40sdc-v-sessmgr01