I P A
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The International Paraneoplastic Association was formed in 1998 to offer support and education for those affected by neurological paraneoplastic disorders including Paraneoplastic Cerebellar Degeneration (PCD), Opsoclonus-Myoclonus Syndrome (OMS) and Eaton-Lambert Syndrome(ELS). Our goal is also to develop greater awareness of paraneoplastic disorders within the medical community and promote research into cures for these disorders.
Neurological Paraneoplastic Syndromes are a group of rare degenerative diseases linked to the body's immune response to cancer. Symptoms include gradual loss of the ability to walk, shaking hands, dizziness, difficulty talking, chaotic eye movements and other motor problems. The symptoms, which vary from mild to severe, may precede the discovery of cancer by months or even years and sufferers may initially be misdiagnosed as suffering from a stroke, alcoholism, Parkinson's and other diseases.
The founding members of the IPA are caregivers and sufferers who came together to exchange information about care and treatment. Over time they came to realize that the support they give one another is a very valuable part of their association and some genuine friendships have developed. New members are, of course, always warmly welcomed into their ranks.
The association also maintains an E-mail list where members exchange information and
support one another. To subscribe to PCD-L, send an email message to:
mailserv@hugse1.harvard.edu
Leave the subject heading blank. In the body of the Message Text, type the following:
Subscribe PCD-L "Your Name"
Send the message. You will receive an automated welcome message from Rick Hopper,
the list manager, within one minute of signing up.
Please note: The information on this website is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition.
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