How can the patient and their supporters acquire this knowledge?
"Initially I didn't get any information. Neither my GP nor my endocrine consultant offered me information, nor was I given the names of organizations that would be able to offer information and support. Things changed when I was forced to give up work as a result of ill health and I found myself at home with a pile of my sister's medical textbooks. I read through every section that I could find on anything to do with the endocrine system to try and get an idea of what was going on in my body. It was around this time that I found the address for The Pituitary Foundation. Approximately six months later I set up my computer to access the Internet and now find most of my information from there."
• Medical sources include the doctors and nurses who work in endocrine and other hospital departments, the patient's local doctor (who may have no direct experience of the condition) and other medical professionals who will treat the patient (for radiotherapy, MRI scans, and so forth).
• Written material can be found in many ways. General medical encyclopedias are vague regarding pituitary disease. The local library or bookshop may have medical textbooks, parts of which will be intelligible to the layperson. The book I found, aimed at medical students, has been invaluable, but I didn't understand much of it in the early days.
• The Internet is a first port of call for many. It can be a vast minefield waiting to confuse and alarm. It can also be the source of wonderfully clear patient-oriented information (see Table 1).
• Occasionally articles appear in the media, but often they are rather sensationalized—gigantism is a common example of pituitary disease. A recent television program on that topic talked about "this fatal tumor."
• Patient support organizations are an invaluable source of patient-oriented information and are likely to provide leaflets on specific conditions as well as a help line service.
"I came across a leaflet the night before my operation. It was marvellous. I slept with it under my pillow."
• Patient support groups may be invaluable to some people, as will be personal contacts (face-to-face or by telephone). Their down side is that experiences may be out-of-date, frightening, or depressing.
• Government-provided telephone support services may have some information, but in my experience pituitary disease is too specialized for them.
The sources are many. You can influence some of the patient's searching by pointing them in the right directions. Tell them when you use the words "pituitary tumor."
"To me this was a key moment when a leaflet or phone number would have been of invaluable help."
"Initially I got quite detailed informationfrom the Encyclopaedia Britannica, and medical books. In later years, both ACTH [a UK-based Cushing's support group] and The Pituitary Foundation have been helpful; also I have learned a lot from the Internet."
"I did not really start to understand my condition until the day I was admitted for surgery when the doctor spent a long time explaining things to me."
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