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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 http://www.pituitary.org

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 of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights
Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.

The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.


I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing. (This one I still struggle with.  I constantly feel like I am asking for things - more tests, more medications, more opinions.  I need to realize that I have the right to do all of these things if it's going to make me a healthier person in the end.)


Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.


I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.


I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state. (Another tough one. On more than one occasion, I have had a hard time at work because I refuse to put my health at risk by seeing patients with very contagious illnesses.  It's hard for people in general to understand why I cry more than most people or why I look the way I do - it's not because I eat ice cream all day!)


There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.


My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment. (Is it just me or do other's with chronic illnesses seem to have trouble talking about it at work?)


I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse. (This one makes me cry EVERY TIME I read it.  I need to be reminded that I am here for a reason and yes, I've had more challenges than a lot of people my age but I am a stronger, smarter, and more caring person because of it.  I need to continue to get medical help so one day I can help even more people through this disease.)


* I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

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