Navigating Flares: My Experience and What Helps Me Get Through by Helen Jones
One of the toughest parts of AS is its invisibility; it can lead to misunderstandings and a sense of isolation …
Juvenile Spondyloarthritis (JSpA), also known as Juvenile Spondyloarthropathy, is the medical term for a group of childhood rheumatic diseases, which cause arthritis before the age of 16 and may span through adult life. The juvenile spondyloarthropathies include enthesitis-related arthritis, undifferentiated spondyloarthritis, juvenile ankylosing spondylitis, psoriatic arthritis, reactive arthritis and arthritis associated with inflammatory bowel disease (also called enteropathic arthritis).
JSpA typically causes pain and inflammation in the joints in the lower part of the body, for example, the pelvis, hips, knees and ankles. Other areas of the body can also be affected, such as the spine, eyes, skin, and bowels. Fatigue and lethargy can also occur.
Getting diagnosed with juvenile spondyloarthritis can be a difficult time for both patient and parent. Our SpondyKids.org site offers the latest medical information, as well as practical resources to help make sure kids have everything they need, including any needed accommodations, to thrive in school. You will also find tips from other parents, and stories from youth living with juvenile spondyloarthritis.
In juvenile spondyloarthritis, sometimes the symptoms are episodic and unpredictable, seeming to come and go without an obvious cause over a long period of time. This cycle of disease flare up followed by remission may be repeated many times.
It is important to note that the disease progression and the severity of symptoms vary in each person. Some children may experience a mild, short-term disease, whereas others experience a severe, long-term condition.
The diagnosis of juvenile spondyloarthritis (JSpA) can be difficult because the symptoms are sometimes episodic and unpredictable. However, it is important to get a correct diagnosis as soon as possible in order to begin treatment. This is the role of a pediatric rheumatologist –– a physician with special training in diagnosing and treating arthritis in children. It is important to note that even in the care of the most experienced rheumatologist, a diagnosis can involve extensive testing and time.
Although there is no known cure, the good news is that there is much that can be done to help. To that end, it is very important to have a correct diagnosis made as quickly as possible. This is the role of the pediatric rheumatologist, who is a physician with special training in rheumatic diseases (arthritis) in children. In order to make a diagnosis, he or she will evaluate your child’s history of symptoms, perform a complete physical exam and do laboratory tests, and then decide upon a course of treatment that will sometimes involve bringing in other medical experts. These can include an eye doctor (ophthalmologist), bowel doctor (gastroenterologist), and sometimes a skin doctor (dermatologist).
The exact cause is unknown, but genetics do play a key role. Much like in adult-onset spondyloarthritis, the genetic marker, HLA-B27 is often found in those with JSpA.
Even in its mild forms, JSpA can affect your child’s normal daily routines. It’s important to keep his/her daily life as normal as possible to prevent any undue emotional stress. Together with your child’s doctor, inform your child’s teachers and school of his/her condition, and make them aware of any special needs he/she might have such as seating and the need to stretch.
Whenever possible, your child should participate in gym and other physical activities. Remaining active will help your child stay involved with peers and lead a normal life. Before returning to a physical activity, make his/her teachers and coaches aware of any limitations he/she may have. Low impact sports are more favorable than sports that produce high joint stress. However, it is not always necessary to remove your child from high impact sports. Consult the pediatric rheumatologist on what are safe activities and sports.
Although juvenile spondyloarthritis is a chronic disease, the length and scope of JSpA varies in each patient. It is difficult to predict a long-term outcome for this disease, especially in its early stages. The disease can sometimes last for months or years and then go into periods of remission (when the patient seems cured). It can also persist into adulthood.
Note that as research and therapies continue to develop your child can look forward to the advancements medicine is rapidly making.
One of the toughest parts of AS is its invisibility; it can lead to misunderstandings and a sense of isolation …
On one of the many online forums for people living with SpA, we’ve seen several users ask how to tell …
Pediatric rheumatologist, Matthew Stoll, MD, PhD, MSCS, discusses the diagnosis and treatment of juvenile spondyloarthritis as well as some of his current interests in research.
Rheumatologist Abhijeet Danve, MBBS, MD, MHS provides an overview of spondyloarthritis including ankylosing spondylitis, non-radiographic axial spondyloarthritis, and other related diseases.
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