Skip to main content

Pituitary Patients Bill of Rights

I have posted this many times, but only because I think it is so important and different points come up over and over again as I continue to struggle with my health.  I have this posted on my bulletin board at work, it is a helpful reminder of the things I have the right to expect, and reminds me not to walk away when there is something I need to fight for.  The second to last point has always made me cry every time I read it - it's that powerful.  To learn more about the Pituitary Network Association, click on the link below.

What do you go back to over and over again?  Is there something that means so much to you that you share it every chance you get?  How do you react to this?

PATIENTS BILL OF RIGHTS



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-social 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 go back to over and over again?  Is there something that means so much to you that you share it every chance you get?  How do you react to this?



Labels:

Comments

Post a Comment

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…
1 comment
Read more

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…
Post a Comment
Read more

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…
Post a Comment
Read more