Quotes from parents about the concerns they have about their children with rheumatic disease, and the parents’ research priorities.
| Parent of a child with JM | “I would like to see…medications with less (to no) side effects. We need drugs that help fight this disease, but also help our children lead a normal life. Prednisone is not normal.” |
| Parent of a child with JM | “Our daughter was in remission from JDM for 14 years, now at 22 she is having a myositis recurrence. She was the picture of perfect health until last month. What happened?” |
| Parent of a child with JA | “The mental is as hard as the physical. We need a manual, signals to watch out for.” |
| Parent of a child with JA* | “Obviously finding a cure! But finding a way to know which cytokines should be targeted for which person. Jumping from one TNF-inhibitor to another only to have them fail, and having to try other drugs makes a long painful process to find the right drug. I’m also interested in genetics! I would also like to know if there is a trigger that ‘turns on’ arthritis in someone’s immune system.” |
| Parent of a child with cSLE* | “When will he get a flare and will we be back in the hospital? Will he be able to do the work expected at college? Will he be able to hold down a job and support himself and a family?” |
↵* Quoted from electronic survey response. cSLE: childhood-onset systemic lupus erythematosus; JA: juvenile arthritis; JM: juvenile myositis; JDM: juvenile dermatomyositis; TNF: tumor necrosis factor.