The Pituitary Patient Bill of Rights

The Pituitary Patient Bill of Rights
With permission and heartfelt thanks to Robert Knutzen

Preamble

As a patient afflicted with a chronic, often lifelong disease, I wish to affirm the following:

I did not bring this disease upon myself through any form of omission or commission.

I know, however, that my illness and its many symptoms and manifestations are poorly understood, and often imperfectly treated, with results that are unacceptable in any medically civilized society.

I affirm that I am a valuable human being: to myself, my family and the society in which I live and work. My right to proper diagnosis, care and management shall be second to none.

Either I or my fellow patients may have our lives and the length and quality of life at constant risk.

I cannot allow my rights as a member of society to be trampled on. I realize that it is not currently politically popular to give me my fair share of quality medical care, research, education, and mental, moral, psychological or societal care.

For these and other reasons and on behalf of myself, my loved ones, my family, and my fellow patients, I claim the following:

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 disease's 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.

With permission from:
Robert Knutzen, Pituitary Network Association