Juvenile arthritis is not “just arthritis,” the same way a brain tumor is not “just a headache” or a torn ligament is not “just a sprain.”
Osteoarthritis (which most people get if they live long enough) happens when cartilage in the joints wears away from a lifetime of use. THIS is your grandmother’s arthritis.
A preteen with fluid on the heart and lungs. A preschooler losing their sight from eye inflammation. A toddler with knees the size of grapefruits. An elementary school student with osteopenia and stunted growth from long-term steroid use. A teen with permanent, untreatable damage in the feet. THIS is juvenile arthritis.
JA patients get injections of a chemotherapy drug, take dozens of pills every week, know which vein is the best for starting an IV or drawing blood, and have more specialists than teachers. They deal with ignorant, thoughtless comments from people who don’t believe their diagnosis. They have to decide whether to be a normal kid or be pain-free. They have to ration their energy. They have wheelchairs. They know the hours the pharmacy is open. They are surprised that their friends don’t take medicine every morning, and many need to take injections of medicines that are painful a few times a week, or even daily. They wake up stiff and in pain more often than not. They can feel oncoming weather changes in their bones. They can’t go away from home overnight without packing half a dozen different medicines.
These kids are some of the bravest and strongest people you will ever meet, and on a good day, you wouldn’t even know they are sick. They don’t want sympathy. They just want to be normal, but they have to learn a new definition of normal. Their siblings become like nurses, and their parents get a medical education.
Please, whatever you do, don’t ever say, “it’s just arthritis.”
Jeri Téllez is mom to a child with an autoinflammatory type of arthritis known as systemic onset juvenile idiopathic arthritis (SoJIA), also called Still’s disease. SoJIA/Still’s is just one type of arthritis that can start in childhood. Other forms of juvenile arthritis have an autoimmune cause. All juvenile arthritis types share some similarities in how they can severely affect the children who live with these diseases. These are systemic diseases–They are not just arthritis. Many other autoinflammatory diseases also have some form of arthritis and are systemic diseases. Some symptoms mentioned in this article related to SoJIA or JA can also be seen in some other autoinflammatory diseases, including other syndromes involving macrophage activation, NOMID/CINCA, and a few others.
The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases.
*Top photo by PhotoEuphoria/Bigstockphoto.com