At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.” I listened to the various programs offered by a children’s hospital and saw a number of photos of doctors at events in the park with their patients and families. But really, the best teacher for me on this topic was the aunt of a girl named Amanda*.
Amanda’s aunt saw her niece was acting different and in pain, but her parents made excuses why she was not active. They didn’t want to believe their daughter was not well, so they often told themselves she was just lethargic or simply unmotivated.
I’m a dad. I get it... with every fiber, I want my children to be healthy. My children have less than a 20% chance of having AS. However, the odds of my having AS was much less, so that’s not comforting for long. It’s always in the back of my mind. Yet, when my child has an ache, I look for a mechanical cause. I console myself that they are in pain because of an athletic game or strenuous activity.
Amanda’s aunt is a hero. She’s a detective. She epitomizes empowerment. She listened to Amanda and began asking questions. She searched symptoms on ‘Doctor Google’ and found www.spondylitis.org . She even called the Spondylitis Association of America (SAA) 1-800 phone line and we spoke on the phone. She was extremely frustrated with the situation and couldn’t watch Amanda – at the prime of her life – living in such pain. She took Amanda to a rheumatologist from SAA’s directory of spondylitis specialists – and later drove 40 minutes to come to an educational/support group to meet others with spondylitis and asked us a lot of questions. After Amanda was diagnosed, the family started coming to meetings with Amanda. At one meeting, we had Amanda’s mother, father, both brothers, uncle and, of course, her aunt. They didn’t participate much other than to say, “We are here for Amanda, whatever she is going through we are here to support her and learn.” They even brought homemade refreshments and stayed after to help clean up. A couple years after that first phone call from Amanda’s aunt, Amanda still comes to meetings when she can get off of work. She drives in alone, but I’m sure when she gets home, she’s understood and supported by her family in almost every way possible. Beyond this, she has the tools to manage her AS and her life.
And to think, it all started because Amanda had a strong advocate in her family. #BestAuntEver
*True story (names have been changed)
This article was written by Richard Howard, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.