Parents' Blog

I am sure we have all heard much too often clichés such as “_______ knows no boundaries” or “things can be worse.”  I have never cared for such clichés because they invalidate subjective experiences, whether they are negative, neutral, or positive.  As a social worker,...

Have you searched for JSpA do’s and don’ts? I think we all do. We want to make sure we are doing the best we can for our child. Over the years, our list of do and don’t has grown. Here are a few that you...

Your New “Home” – the JSpA Parent Circle: We all exist in many different circles. We have friends from childhood. We have roles we play in our families. We have co-workers and roles we play at work. We have adult friends. There is also a...

Caregiver Care – It’s Alright to Take Time for You Every parent is a caregiver but a parent of a child with a chronic illness becomes a caregiver, medical linguist, translator, chauffer, appointment scheduling genius and so much more. Many times the one thing that...

As a parent, we want to do the right thing for our child. We do not want to make things worse. JSpA brings with it a lot of unknowns and new parenting challenges. Pain plays a huge role in patients with JSpA and disease activity....

A JSpA flare takes on different forms. Sometimes is presents as a rash, sometimes a stiffness in one or more joints, sometimes a terrible headache and fatigue, sometimes it is pain so terrible that is causes mobility issues for the patient. Each patient is different....

I remember vividly the day I got the call with our daughter’s results from her MRI. Our rheumatologist’s number popped up on my cell phone. I was in the parking lot picking up another child from football practice. Our doctor said “Oh, you are driving?...