Sarcoidosis Patient Bill of Rights

[Guest guest]

I read this on https://stopsarcoidosis.clinicahealth.com/index.pl and

hope it is OK to repost here. Many thanks to the author for his

insight...

The Sarcoidosis Patient Bill of Rights

Posted Friday January 12, 2007 at 10:17 AM EDT in Living with

Sarcoidosis

The Sarcoidosis Patient Bill of Rights

Sarcoidosis is a historically documented disorder with manifest

physical evidence and defined symptoms. Sarcoidosis is not imaginary

and its victims have rights.

Article I

Any Patient experiencing the suspect symptoms of Sarcoidosis has the

right to a prompt, speedy, and definitive diagnosis by microscopic

examination of tissue sample by qualified medical personnel.

Prolonged diagnosis by exclusion via lengthy and/or expensive testing

and guesswork is entirely unacceptable.

Article II

A Sarcoidosis Patient has the right to a doctor who has, or will in a

reasonable amount of time, become intelligently familiar with all

aspects of Sarcoidosis and its current research and treatment

options, in order to retain the privilege of being that Patient's

physician.

Article III

Sarcoidosis is a systemic disorder, and the Sarcoidosis Patient has

the right to present with complaint about any part of their body, at

any time, and be listened to at length, with courtesy, respect, and

dignity.

Article IV

The Sarcoidosis Patient has the right to have the Sarcoidosis

disorder, all treatment options (including the option of no

treatment,) fully and carefully explained in simple layman's terms.

All side effects, and all complications resulting from treatment,

must be disclosed before said treatment is prescribed. The Patient

has the right to an indefinite period of time to accept treatment, or

deny it.

Article V

The Sarcoidosis Patient has the right to retain as many, or as few,

doctors and/or specialists as they wish. Any current doctor and/or

specialist may be terminated at anytime without notice or cause. The

Patient also has the right to expect their doctors to share

information and work together towards a common course of action.

Article VI

The Sarcoidosis Patient has the right to immediate emergency medical

attention should they feel their life is in danger.

Article VII

The Sarcoidosis Patient has the right to a fair hearing concerning

their ability to work, the conditions of their continued employment,

or their inability to work.

Article VII

Sarcoidosis is not infectious, and the Sarcoidosis Patient shall not

be discriminated against due to their illness.

Article VIII

The Sarcoidosis Patient has the right to not have their condition

held up to any other disease for comparison, as it is irrelevant.

Sarcoidosis is a unique disorder and shall be treated as such.

Article IX

The Sarcoidosis Patient has the right to freely express, feel, and/or

grieve in regard to their discomfort (physical, psychological, and

emotional,) in any manner that they wish, within the acceptable local

code of conduct.

Article X

The Sarcoidosis Patient has the undeniable, unapologetic, and

inalienable, right to feel unwell.

— My name is theGardener, I have two dogs, a cat, and sarcoidosis.

[Guest guest]

I love theGardener and have read his many posts at FSR. It is a great site full of a wealth of info. Thanks Tony.Blessings,BeckyTony wrote: I read this on https://stopsarcoidosis.clinicahealth.com/index.pl and hope it is OK to repost here. Many thanks to the author for his insight... The Sarcoidosis Patient Bill of Rights Posted Friday January 12, 2007 at 10:17 AM EDT in Living with

Sarcoidosis The Sarcoidosis Patient Bill of Rights Sarcoidosis is a historically documented disorder with manifest physical evidence and defined symptoms. Sarcoidosis is not imaginary and its victims have rights. Article I Any Patient experiencing the suspect symptoms of Sarcoidosis has the right to a prompt, speedy, and definitive diagnosis by microscopic examination of tissue sample by qualified medical personnel. Prolonged diagnosis by exclusion via lengthy and/or expensive testing and guesswork is entirely unacceptable. Article II A Sarcoidosis Patient has the right to a doctor who has, or will in a reasonable amount of time, become intelligently familiar with all aspects of Sarcoidosis and its current research and treatment options, in order to retain the privilege of being that Patient's physician. Article III Sarcoidosis is a systemic disorder, and the

Sarcoidosis Patient has the right to present with complaint about any part of their body, at any time, and be listened to at length, with courtesy, respect, and dignity. Article IV The Sarcoidosis Patient has the right to have the Sarcoidosis disorder, all treatment options (including the option of no treatment,) fully and carefully explained in simple layman's terms. All side effects, and all complications resulting from treatment, must be disclosed before said treatment is prescribed. The Patient has the right to an indefinite period of time to accept treatment, or deny it. Article V The Sarcoidosis Patient has the right to retain as many, or as few, doctors and/or specialists as they wish. Any current doctor and/or specialist may be terminated at anytime without notice or cause. The Patient also has the right to expect their doctors to share information and work together

towards a common course of action. Article VI The Sarcoidosis Patient has the right to immediate emergency medical attention should they feel their life is in danger. Article VII The Sarcoidosis Patient has the right to a fair hearing concerning their ability to work, the conditions of their continued employment, or their inability to work. Article VII Sarcoidosis is not infectious, and the Sarcoidosis Patient shall not be discriminated against due to their illness. Article VIII The Sarcoidosis Patient has the right to not have their condition held up to any other disease for comparison, as it is irrelevant. Sarcoidosis is a unique disorder and shall be treated as such. Article IX The Sarcoidosis Patient has the right to freely express, feel, and/or grieve in regard to their discomfort (physical, psychological, and emotional,) in any manner that they wish,

within the acceptable local code of conduct. Article X The Sarcoidosis Patient has the undeniable, unapologetic, and inalienable, right to feel unwell. — My name is theGardener, I have two dogs, a cat, and sarcoidosis.

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[Guest guest]

I really liked that Bill of Rights. I think I am going to share it with my family since the bill really fits me! Thanks, Shauna in ATL

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