Only 3 days (counting today) until the Cushing's Awareness Challenge begins. At night, when I'm supposed to be sleeping, ideas for posts keep swarming through my head. Sometimes, they form into fully-written posts. Then, when I wake up, the posts are gone.
I plan to follow the suggestions to some extent and have a few ideas of my own. Over the years, I've posted lots on several blogs but I don't know if I can get 30 days of Cushing's stuff together!
At the moment, there are 23 participants in this challenge and growing. Please follow their blogs. The list is here and is constantly updated as new URLs come in.
If you want to join us, its not too late. Directions and suggestions for posts can be found here: http://cushie-blogger.blogspot.com/2012/03/cushing-awareness-challenge.html
If you have ideas for what you'd like to read about (Cushing's related, of course), please feel free to put it in the comments area.
Leiana was diagnosed with autoimmune adrenal insufficiency in 2009 and put on 30mg of Cortef for the rest of her life. Her cortisol levels were below normal of -1. She has been trying to wean off the steroids with no success.
She had a 3.9 adenoma on the right adrenal gland removed in Sept 2010 is waiting for the left adrenal gland to kick in. She is extremely skinny and bony and eats around 3000 to 4000 calories a day.
Read Leiana's bio here.
Listen Live at http://www.blogtalkradio.com/CushingsHelp
The Call-In number for questions or comments is (646) 200-0162.
Archives will be available after the interview
On behalf of the Brain Science Foundation, the Department of Neurosurgery at Brigham and Women’s Hospital and the BWH Pituitary/Neuroendocrine Center, you are invited to attend Pituitary Day. This program will take place on Saturday, March 24, 2012, from 7:45 AM to 5:00 PM at the Bornstein Amphitheater at Brigham and Women’s Hospital in Boston.
Pituitary Day is a conference that unites patients, caregivers, family and friends with leading clinicians, researchers, nurses and other experts to discuss the latest in pituitary diagnosis and treatment. By way of a series of presentations and panel discussions, we will discuss basic and new information related to pituitary disorders, including physical and psychological aspects, and other important patient issues.
Our expectation is for this to be a truly remarkable and empowering experience and we hope you will consider joining us this year. For more information, please contact Sarah Donnelly at 781-239-2903 or sarah@brainsciencefoundation.org.
When
Saturday March 24, 2012 from 7:45 AM to 5:00 PM EDT
Where
Brigham & Women's Hospital, Bornstein Amphitheater
45 Francis Street
Boston, MA 02115
If you haven't registered for this important webinar, please do so soon. Space is limited.
Reserve your webinar seat now at: https://www3.gotomeeting.com/register/287161014
Please join us as Sharmyn McGraw presents "Lessons Learned in the Past Decade."
Almost 12 years ago (after Sharmyn's own pituitary surgery), she and her pituitary neurosurgeon, Dr. Daniel Kelly, founded a pituitary tumor patient support group. The group now mails out more than 800 invitations to attend their bi-monthly meetings. The sessions are videotaped and put on online to help educate other patients and their families all around the world.
Sharmyn's in-depth understanding of pituitary disorders comes not only from her own battle against Cushing's disease, but from personal relationships with hundreds of patient worldwide.
Highlights of Sharmyn's Media Appearances: The Discovery Health Channel: "Mystery Diagnosis" airing all around the world for the past 8 years. The Montel Williams Show, Medstar News Specials, CNN, Woman's Day Magazine, Woman & Home Magazine (London), MSNBC.com, Biology of Humans textbook (Pearson/Prentice Hall Publishing), presentations at the American Medical Association Media Conference (NYC) and the National Institute of Woman's Health (NIH).
Presentation:
"Lesson's Learned in the Past Decade."
• The Face - Who are we?
• The Disease - How far have we come and how far do we still need to go?
• Who Do We Become? - The barriers that kept patients searching for years for an answer to an insidious illness.
• How Do We Do Better? - The importance of persistence.
• Raising Public Awareness
Title: Lessons Learned in the Past Decade
Date: Monday, March 12, 2012
Time: 6:30 PM - 7:30 PM PDT
After registering you will receive a confirmation email containing information about joining the Webinar.
System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server
Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer
Working on a new video with Beth G. as my partner. With Corlum now thrown in the mix, we want to compare the best treatment options for recurring cushings. We want to hear from you about weather you are glad you had a BLA? if you could do it over again, would you? If you had meds available, did you try them first? What challanges do you have on a regular basis because of BLA? Why would you not want a BLA? What do you hope to get out of having a BLA?
We are not looking for the medical side, just the human side. If you would like to participate, message both Beth and myself on the same message. If you have a webcam, we would like to include video into the video and set up an interview.Remember, its all about Awareness!
I'm working on a questionnaire so that everybody can answer the same set of questions. Trisha or I will email it so you to fill out, so can anybody interested please send us your email address? We're interested in you if:
a) You've had a BLAb) You're considering a BLAc) You're a potential candidate but would never consider a BLAPLEASE REMEMBER: Any information you provide related to a BLA will become public, so if you're not willing to have your thoughts and answers shared with the public (meaning outside of this group in a video that will hopefully go viral on youtube!) then please don't sign up to help with this project!Feel free to ask us questions! Thanks!!
