For Rare Disease Day 2012, Inspire and Encephalitis Global release, "I'm Not the Me I Remember: Fighting Encephalitis"
Inspire and patient advocacy organization Encephalitis Global release special report that examines the effects of the rare neurological disease encephalitis on patients and their families.
- (1888PressRelease) February 28, 2012 - Encephalitis survivors share "silent suffering" even after two years from the initial onset of the illness, according to a recent survey of members of Inspire's Encephalitis Global Support Community, an online group.
In the survey, detailed in a new free online special report, "I'm Not the Me I Remember: Fighting Encephalitis," many survivors cited lingering symptoms that plague them, such as short-term memory loss and communication difficulties. Yet these ailments often go undetected by their families, friends and colleagues, creating a feeling of isolation.
"Survivors often have undiagnosed memory loss and other residual neurological symptoms, which are frustrating to the patient, family, and friends," said H. Gordon Deen, M.D., professor of neurosurgery at Mayo Clinic, Jacksonville, FL. "The situation is all the more frustrating because the patient may appear to be superficially normal."
Inspire and Encephalitis Global, an international support organization, created the 32-page report from results of an online survey of more than 250 members of Inspire's Encephalitis Global Support Community. The report's release coincides with Rare Disease Day 2012, Feb. 29., a day of advocacy worldwide for people affected by rare disorders.
One caregiver, in responding to the survey, said the rare disease casts a "long shadow" into the lives of patients and their loved ones.
Psychologist Steven W. Sliwinski, Ph.D., past president of the Collin County Psychology Association in Dallas, TX, noted, "Dealing with this sudden and dramatically life-altering illness is overwhelming enough, but when a healthcare provider or family member dismisses the patient's experience, it can be traumatic and lead to painfully isolating and shaming conclusions by the patient."
Encephalitis is an inflammation of the brain often caused by a viral infection. Types of infectious (viral) encephalitis include herpes simplex encephalitis and mosquito-borne encephalitis. Other types of encephalitis include autoimmune encephalitis (Hashimoto's Encephalitis, Rasmussen's Encephalitis and Acute Disseminated Encephalitis, known as ADEM), HIV encephalopathy and postvaccinal encephalitis. Patients require urgent care due to rapid development of fever, headache, seizures, and neurological issues. This rare disease can be fatal.
Key findings of the Encephalitis Global/Inspire survey revealed the emotional impact that survivors share, the difficulty in diagnosing the illness, what treatments proved more effective, and the importance of online communities, among others.
• Survivors and caregivers share a high degree of torment and anger about the frequency of misdiagnosis and the lack of adequate follow-up care after proper diagnosis. This includes caregivers of those who did not survive the disease. More than 20% of survivors responding to the survey say they were misdiagnosed, sometimes as long as two years later. Feelings of being dismissed (often stemming from misdiagnosis) can significantly complicate a survivor's recovery, especially those whose doctors suggested they were mentally ill.
• Although neuropsychological exams were not always ordered, about half of the patients who did take this exam benefitted from their results. This, perhaps, is from discovering the root causes of "issues" experienced.
"Like other rare diseases, it is difficult for the medical profession to study encephalitis using traditional research methods, because so few cases are seen at even the largest medical centers," said Dr. Deen. "Internet support groups are starting to play an increasing role in rare disease research. These groups are able to assemble large numbers of patients with the disease in question, and present themselves to medical researchers as potential study participants."
Deen added, "Having a large pool of readily available study participants will eliminate one major barrier to research on encephalitis and other rare diseases."
Encephalitis Global is a North America-based nonprofit alliance of persons impacted by encephalitis. It functions to connect encephalitis survivors and caregivers. With this connection, Encephalitis Global shares information to raise awareness, alleviate unnecessary suffering, and prevent untimely deaths.
About Inspire
Princeton, N.J.-based Inspire accelerates medical research through the creation and operation of safe, moderated online communities, organized by medical condition, for patients and caregivers. Inspire builds and manages these communities in exclusive partnership with more than 75 national patient advocacy and support organizations, including the National Organization for Rare Disorders (NORD) and nearly a dozen other organizations dedicated to helping those with rare diseases. Among Inspire's other partner organizations are the Alzheimer's Foundation of America, the National Osteoporosis Foundation, the National Psoriasis Foundation. Inspire and helps life science organizations connect with these highly engaged populations. For more information, call (800) 945-0381.
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