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Showing posts from August, 2011

Cushing's Quality of Life Survey

The National Institute of Health is conducting a quality of life survey meant for patient's who have or have had Cushing's Syndrome.  Please fill this out if you are a diagnosed Cushie!  I can't stress how important it is that big institutes like the NIH get accurate pictures of what life looks like before and after treatment.  A surgery to remove a tumor does not necessarily mean we "go back to normal".  In order to get help and support throughout the recovery process, healthcare professionals need to know what areas we need help with. Information about this survey and your consent to participate Patients with Cushing's syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing's syndrome. We want to learn more about the patients' experience during the post-surgical recovery phase with particular reference to quality of life. We ar

Pituitary Patients' Bill of Rights

Reading this again, I thought it was worth re-posting. Coming up on my 1 year anniversary of my BLA, I am still overwhelmed with the long term issues that Cushing's Disease and subsequent pituitary surgeries have left me with. This is a good reminder to me that I deserve to be here, I have the right to have others believe and support me, and I have the right to be healthy. You can read more about the PNA at The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders. PNA is supported by an international network