What Patient Organizations and Support Groups Provide

• A feeling that you are not alone.

• Contacts and conversations with other patients and supporters that can have a practical impact on day-to-day quality of life.

• The opportunity to exchange experiences, although these may not always be positive ones or reflect current treatment.

• Information via literature, videos, and help lines.

• The reassurance of seeing others who have survived and are coping successfully.

• The opportunity of helping others.

"All the medical staff that I had spoken to about the problem had advised that the diagnosis was rare, which gave a feeling of being alone with the problem. The [support organization's] booklet I picked up at the clinic was very enlightening, so I wrote to them for more detail, registered myself on their files and have not looked back since. Via the local support group and the national help line I found a feeling of support and realisation that I am not alone."

"I have found patient support groups valuable, especially meeting fellow patients. But lately I have not attended because I cannot cope with meeting patients, maybe older than myself, who are struggling. I'm almost in denial. I feel I do not want to be reminded what is happening to my body either now or may in the future because of the nature of the disease."

"Patient support organizations are a useful source of information. It is also good to know that you are not alone and to gain reassurance from other people that others also experience the same symptoms, both physical and mental."

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