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Why This Encephalitis Forum Can Be Helpful When You Have a Million Unanswered Questions

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As World Encephalitis Day approaches on February 22nd, memories of a very difficult time come back to me. In 1999, I had encephalitis and was hospitalized for four weeks. Once home, I was booked to visit my neurologist every three to six months. I respected this, since he had done his job – my life had been saved.

But… what now?

My family and friends searched for further information and came up empty-handed.

For how long must my parents sit with me all day? Why don’t I hug my kids? Why was I crying all the time? Why was I always so afraid? I looked great…why wasn’t I acting great? How could others help? Why did I sleep so much? What should others say to me? When would I be back to normal? Can anybody help?

While many of these questions were not worth booking yet another appointment with our family doctor, they were still very important questions to which we needed answers.

Harry Houdini once said, ““My chief task has been to conquer fear.” Post-encephalitis, one may struggle with physical, emotional, behavioral, and social deficits. The fear which touches survivors and their family is a fear of the unknown, as it may take days, weeks, or even months for issues to develop and become apparent.

Encephalitis mentors are people who have already experienced that fear. They are people who have already walked the difficult pathway others have just arrived upon. Survivors and caregivers have a million questions, and no answers. They benefit when they can ask questions and learn more from people further down the road in this experience. The patient and her/his family benefit from learning more about the issue at hand and how to deal with the problems which can arise. The big and the smaller issues can both feel overwhelming for the person struggling. The mentor can guide by sharing skills, experience, and knowledge. In a discussion with an encephalitis mentor, the family learns more about the issues the patient may be struggling with, and how they can help.

Since 2008, Encephalitis Global’s Inspire Discussion Forum has welcomed members from more than 95 countries. To date, that’s more than 6,900 survivors and caregivers sharing their kindness, their experience and their knowledge as they help each other every day. Various members of the forum have shared their feedback. One member said, “My son survived herpes encephalitis in 1994 at the age of 17 months. Encephalitis Global has opened many doors for us with regard to therapy, life goals, and friendship. Wendy is a wonderful teacher and mentor to all who survive encephalitis. Thank you for the knowledge we have gained through this wonderful organization.”

A second commented, “Medical science has lots to learn from our shared experiences and adaptive and self-rehabilitation methods. Encephalitis Global has opened a door into the post-encephalitis world.”

Our members realize the importance of community. “Encephalitis Global has been a lighthouse in the storm for me. I can’t bear to think how I would cope with my situation without the support of the Encephalitis Global community, where I find support, encouragement, links to information, and perhaps most importantly, a place where I can connect with people who understand the far-reaching impacts of encephalitis/encephalopathy, and who stand ready to reach out with a helping hand to those who struggle with these diseases, whether they are patients or caregivers.”

The ability for encephalitis survivors and caregivers to share information and support with each other truly does conquer their fear. Our Encephalitis Global Inspire Forum is the largest discussion forum in the world dealing with the topic of encephalitis – and that’s a fact our members can be proud of.

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Originally published: February 14, 2018
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