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Cushing's Awareness Challenge - Day 16 - Pituitary Patients Bill of Rights

Melissa over at Cushing's Moxie recently posted the Pituitary Network Association's Patient Bill of Rights.  I first read this about a year ago on her blog, and I still look back at it from time to time.  It reminds me how I need to be treated by friends, family, coworkers, and doctors, and sometimes I don't hold people to these standards, especially at work.  You can find this over at Pituitary Network Association.



PREAMBLE

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.
  • 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.
  • 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.
  • 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.

* 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.


What do you think of these rights?  Is there anything else you would add?  Do you feel like you are treated to these standards?

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