On Friday, August 15, 2014, an estimated 3.8 million* viewers tuned in to watch a 20/20 special report titled “My Strange Affliction” on ABC. The segment featured, among others, a young woman named Hannah Wilkinson, and her mother Tonya, and shared dramatic details of the challenges they face on a daily basis living with Prader-Willi syndrome. When we learned this segment was on the horizon, we were both excited about the awareness it would bring nationally and apprehensive about how the producers would choose to represent PWS.

Due to the usual time restraints, the segment focused almost completely on Hannah’s struggle with hyperphagia, her overwhelming compulsion to eat and how obesity was affecting her life as a young teenager. Those of us who have loved ones with PWS know that their challenges go well beyond dealing with hyperphagia.  We know that PWS is a complex syndrome that has a long list of related symptoms that range from manageable to life-threatening. Perhaps most importantly, we know that supporting, both through advocacy and fundraising, scientific research will one day eliminate the challenges of PWS.

Had we had the opportunity to speak with the reporters from 20/20, we would have shared the exciting news around PWS clinical trials and the 17 projects FPWR is funding this year, as well as explained that we believe we are on the cusp of finding treatments that will improve the lives of our PWS families in meaningful ways.  We would have tried to help them understand that high-quality research will lead to more effective treatments and an eventual cure for this disorder, with important implications for people in the general population struggling with obesity, anxiety, and other mental health challenges . We would have told them that there is great reason for hope in our community and that, as a community, we grow more passionate and committed to helping our kids live more independent lives every day.

PWS is complicated. We don’t expect a news segment to be able to fully describe what our community goes through every day, but we are extraordinarily grateful to Hannah and Tonya Wilkinson for sharing their story. We know their willingness to do so has raised awareness about PWS and shined a light on the tremendous challenges that families face in dealing with this rare disorder.  We will work to continue to spread awareness of PWS and use these opportunities to make a difference: through research, we can make a difference in the lives of our families.

 

 

Would you like to get involved with FPWR and help advance PWS Research? Participate a One SMALL Step event, attend the FPWR Research conference this November or make a donation! Your support is greatly appreciated. 
 
*http://tvbythenumbers.zap2it.com/2014/08/18/friday-final-ratings-masters-of-illusion-adjusted-down/293991/