Making the RARE voice heard
As World Encephalitis Day approaches on February 22nd, memories of a very difficult time come back to me.
In the year 1999 I had encephalitis and was hospitalised for four weeks. Once home, I was booked to visit my neurologist every three to six months - his job was done – my life had been saved. But… what now?
My family and friends searched for further information and came up empty-handed and with their questions unanswered.
So many of these questions were not worth booking yet another appointment with our family doctor… but they were 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, behavioural, and social deficits. The fear which touches survivors and their families is a fear of the unknown. 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. People who have already walked the difficult pathway others have newly 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 issues AND the smaller issues both feel huge for the person struggling. The mentor can guide by sharing skills, experience and knowledge. In 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 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.
Here is what the Forum has meant to those who have come to us looking for answers:
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 E. Thank you for the knowledge we have gained through this wonderful organisation
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-E world.
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 patients or caregivers
The ability for encephalitis survivors and caregivers to interact truly does help conquer their fear. Our Encephalitis Global Inspire Forum is the largest forum in the world discussing encephalitis and autoimmune encephalitis on a daily basis. As World Encephalitis Day approaches, we encourage all members of our Forum to be proud to be helping encephalitis survivors and caregivers from around the world.
Rare Revolution Editor