#BestAuntEver: The Story of a Family-Centered Care and Empowerment

At the American College of Rheumatology Conference in San Francisco, I attended a session on “Empowerment through the family-centered care approach.”

  reprinted from http://www.thisaslife.com/lifestyle/best-aunt-ever

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 foundwww.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.

My Experience at the SPARTAN Conference

My Experience at the SPARTAN Conference

By Richard Howard, MBA

 


Richard Howard and our 2014 award recipient, Pamela Weiss, MD.

A few weeks ago I had the opportunity to attend the two-day long SPARTAN conference in Denver. Comprised of spondylitis clinicians and researchers, SPARTAN (the Spondyloarthritis Research and Treatment Network) meets each year to discuss new research and to hear abstract presentations from Fellows and SPARTAN members.

 
While at the conference, I heard first hand from numerous researchers how SAA’s funding is advancing spondylitis research. Just this past year, in fact, SAA awarded three $20,000 grants to early career researchers focusing on spondylitis - both to recognize their work, as well as to encourage and enable them to continue their research. The award - the SAA/Jane Bruckel Early Career Investigator Award in Axial Spondyloarthritis - started several years ago, and as of now has been awarded to seven promising early career researchers.  I’ve met them all and they are brilliant.

My favorite moment of the conference would in fact be a brief interaction in a quiet corridor with one of our past awardees. 
 

The incredible, greatly respected researcher in spondylitis was walking quickly out of the hall where she had just presented her latest genetic research on spondylitis. We exchanged greetings as we hurried onward and before we parted ways she said, “I’m very grateful for the SAA. You guys got me started in spondylitis all those years ago.” Our encouragement and nudge toward spondylitis had certainly paid off - big.



Drs. Michael Weisman and John Reveille at a past SPARTAN meeting.



 I also had lunch with a group of young researchers from around the country who were anxiously getting ready to present their work to a room of established researchers. One of them may one day be nominated to win our award. I learned that most of these gifted doctors and researchers hadn’t really decided what to focus on in their careers. I grabbed the opportunity to let them know why work in spondylitis is so critical for so many people. The reality is that spondylitis is woefully underfunded and under researched, and since it’s not well known, young researchers have to learn about the disease and its impact.

As people living with spondylitis, we have questions and need answers. The pace of progress is literally painfully slow for people with spondylitis. However, in my lifetime, I’ve seen ineffective and hazardous “treatments” routinely prescribed be disproven, seen things I know - in my gut - to be helpful, confirmed, and new treatments discovered. SPARTAN also came into existence in my lifetime, with SAA organizing its first meeting in 2002, and carrying the group under its fiscal umbrella for 11 years thereafter.

 
 

We are at a very exciting point in research. The costs to do genetic analysis - not just on human genetic codes but also on our microbiome system - is coming down. This is enabling researchers to gather and analyze greater amounts of data to better study questions like: why do so many people get spondylitis; why do some people’s disease progress so quickly and painfully; and most importantly, what can be done to prevent and interrupt the disease.

I’m grateful for the work that has already been done and hopeful for the future.