About Pituitary and Patient Care 




Individually, each pituitary disease is considered a "rare" disease. If all of the individual pituitary diseases are combined under the heading "pituitary disorders", pituitary disorders are not considered "rare". The Pituitary Network Association (PNA), an international non-profit organization for patients with pituitary tumors, reports that one in five people have some form of pituitary disease.

As with most rare diseases, the approach to supporting pituitary patients is fragmented across the country and healthcare system.  The result is that patients with a pituitary disorder may face extraordinary challenges that include difficulty getting a diagnosis, misdiagnosis, difficult treatment regimes, co-morbid conditions, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges can be faced by Canadians with “non-rare” conditions, but the impact is often much more severe for pituitary patients who experience complex chronic health issues. We know that it sometimes takes years to get a proper diagnosis. In most cases the patient has never heard of these disorders. In too many cases, neither have their doctors.

According to the Public Health Agency of Canada, 60% of adults and 88% of seniors are not health literate*. That means that many patients and caregivers cannot confidently and knowledgeably access, understand, evaluate and communicate information that is related to their health (and the health of their loved ones). They have a great deal of difficulty navigating the often-complex health care systems across this country, and they have a great deal of trouble "decoding" the health information that we all need to process in our daily lives. Similarly, many physicians unfamiliar with pituitary disorders risk making an incorrect diagnosis. A 2004 study** found that 40% of individuals with a rare disease were initially misdiagnosed. For many of the misdiagnosed patients, the misdiagnosis led to inappropriate medical interventions including surgery, medicines, and psychological treatment. In addition to the delay in diagnosis:

Alberta Pituitary Patient Foundation - National Charity
Telephone toll-free:  1-844-532-7134
Registered Charity No.:  77672 1318 RR0001
Mailing Address:  Suite 168, 9768-170 Street NW, Edmonton, Alberta  T5T 5L4
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  • 25% of people reported waiting between 5 and 30 years from the time of first symptoms to a confirmatory diagnosis of their disease
  • 25% of people had to travel to a different region to obtain a diagnosis and 2% had to travel to a different country
  • In 33% of cases, the diagnosis was announced in unsatisfactory terms or conditions. In 12.5% of cases, it was announced in unacceptable ones.
  • The genetic nature of the disease was not communicated to the patient or family in 25% of cases (despite most rare diseases having a genetic component)