a destination to help undiagnosed AIP patients and their physicians identify symptoms consistent with AIP
Can you imagine knowing you are ill but going several years before receiving a diagnosis? Unfortunately, this may be the case for some patients with Acute Intermittent Porphyria (AIP), a serious disease that is rare and may present a diagnostic challenge. AIP mimics many more common conditions. Lack of awareness by physicians can also delay diagnosis and management of the disorder. For some patients, this can lead to years of pain, confusion and emotional distress.
Siren recently collaborated on an informative website for a client specializing in rare diseases, providing a comprehensive resource on AIP (www.AIPorphyria.com) for patients, caregivers and physicians. The site also provides a destination to help undiagnosed AIP patients and their physicians identify symptoms consistent with AIP.
“For even some of the best minds in medicine, AIP can be puzzling,” says Desiree Lyon, Executive Director of the American Porphyria Foundation. “When the disease isn’t recognized, patients are often given medications that worsen their condition or undergo unnecessary surgeries, so bringing attention to AIP is critical.”
Educate, don’t sell
AIPorphyria.com is an example of one of Siren’s key principals: educate, don’t sell. Content on the site includes information on the signs and symptoms of AIP, testing for the condition, recognizing triggers and working with a physician. Information tailored for healthcare professionals provides detail on a variety of topics, including how to diagnose and suggestions on managing those with AIP.
- 20 September 2010 at 6:09pm
- Eileen O'Brien 20 September 2010 at 6:09pm
- Rich Meyer 23 September 2010 at 11:09pm
- Frieda Hernandez 30 September 2010 at 1:09pm
- Kathleen Starr, Ph.D
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