Friday, September 4, 2015

PNA: Cushing's at 16

Copyright Robin and Pituitary Network Association, 2015.
I am thankful to read a Cushing's article in the latest Pituitary Network Association's newsletter. Anything we do to put the word out about Cushing's is good.  I also want to thank high school senior Robin for sharing her story in the article Cushing's at 16.  Every story puts a face to this horrible disease. The photos featured really let you see how Cushing's can change a person's physical appearance.

"Cushing's definitely made me the person I am today, and even though the experience was terrible, I am proud of who I am now." ~ Robin, 18 years old

We all can learn a thing or two about strength from Robin!


I do wish that the PNA would have featured a story of someone who required multiple surgeries before getting better.  Highlighting patients who had one pituitary surgery and got their cure is not representative of the patients who experience Cushing's. I know far more people who required multiple surgeries than those who were cured by one.  In my post entitled Cushie Warriors, I begged those with a Cushie in their life to support them, as many of them required multiple surgeries and treatments and still may not have a cure. It seems odd when so much information is out there about how pituitary surgery cures a Cushie, and it was important to let the few that remain part of the Cushie's support system to know that their Cushie-who-can't-get-well is not the exception but the rule. When I collected that patient treatment information and posted over four years ago in April 2011, there were already 50 people on the list. Kinda high for a rare disease, right?  I have an updated list of Cushie Warriors that tops over 125. That sure is a lot of Cushies out there who are trying to get people to understand that we are really sick and we have to go through a lot of testing to be rediagnosed in order to have multiple surgeries. It would further understanding for the complexity of Cushing's treatment if a national organization like PNA could help us get those stories out.