PNA Survey Results

Last month the PNA put out a survey question to our readers. We would like to thank all of you who participated. Here are the questions we posed:

Do you feel it is more important to invest the majority of "big business" budgeted funds and resources toward:

1) Education and awareness to promote early diagnosis of pituitary and hormonal disorders in an effort to treat the disease early? This would avoid most or all potential adverse effects, including facial and body changes?

or

2) Programs that help to hide or conceal adverse effects of pituitary disease on a patient who is undiagnosed or diagnosed late, such as cosmetic surgery, spa/salon treatments, etc.?

Here are the results:

An overwhelming number of people chose the educational option over the cosmetic option (65 vs. 7).

Here is an example of the comments we received:

Dear PNA,

I received five weeks of cobalt radiation to the pituitary prolactinoma in 1971. As a result, I have lived with a nonfunctioning pituitary for 42 years. I would like more information on how to cope without a functioning pituitary and the possible problems that may develop as a result of taking steroids for over 40 years, especially gastrointestinal problems.

I believe doctors (primary care physicians, endocrinologists and internists) are uneducated as to how to diagnose someone with hypopituitarism. This is obvious from the statistics on how long patients suffer while undiagnosed - it is often years upon years upon years. I believe that this would save lives and avoid other diseases that seem crop up in a cascade effect when the patient is not diagnosed. Also, I don't believe that our disease is rare like the medical industry reports. We are just not diagnosed and end up dying of other diseases such as heart disease, diabetes etc... More than educational materials and awareness programs we need to find knowledgeable doctors who would be willing to do presentations at medical meetings, do commercials etc... to spread the word on how to diagnose and care for patients with pituitary disorders.
- Frustrated Patient

 

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