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!

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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.

Day 27: Create Awareness by Telling Your Story

We build awareness about Cushing's when we share our own experiences. When others see themselves in our stories, we save that life and any others who learn from that person's experience.

Women & Diagnosis: Help for Ladies Home Journal Article Hello Moxie, At the Pituitary Network Association, we are always hard at work trying to raise awareness for pituitary issues that affect patients like you, family members and physicians each and every day. And now, we need your help! Most immediately, Ladies Home Journal Magazine is looking for women who were convinced something was medically wrong with them and who diagnosed their own illnesses despite baffled or even dismissive doctors. Ideally, this person should be diagnosed and currently being treated for their condition. If this situation sounds like you and you have a strong, working knowledge of your condition, and can speak about it in detail with the media, we would love to hear from you. We are also looking to build our database of patient stories for future and ongoing media opportunities and requests. If you would be willing to speak openly about your story to the press, it could greatly help us raise awareness for others going through similar situations. If you can help with either of the above requests, please e-mail us at info@pituitary.org. We will be in touch with further details. Thank you!

The Pituitary Network Association is a strong advocate for those fighting pituitary tumors.

Source: Pituitary Network Association, www.pituitary.org