HELLO my name is Amanda age 29 I was born with Dravets Syndrome and would like to raise awareness of what my life is like living with a life limiting Sever form of Epilepsy.
This is written by my Mum for me.
My mum and dad will look after me for the rest of my life, due to the many different health issues that my Dravets Syndrome has brought . Dravets Syndrome is quite rare and has caused me to have sever, prolonged unpredictable, multiple seizure that are difficulty to control with Anti-convulsant medication. I have had many emergency hospital admissions for prolonged seizures,and been on a Ventilator and in Intensive Care due to the severity of my seizures, ranging from 10 minutes to several hours..My parents have Emergency Rescue Medication they have to carry with them at all times ,we have a portable suction machine, and Oxygen at home to try control these life threatening and life limiting events. Over the last 29 years, I have had almost all known medications in a variety of cocktails to try reduce my extremely resistant Epilepsy.I often have back ground seizure activity going on most days that affects activity that I might be taken part in.
Part of my Dravets Syndrome is a Communication Disorder , I am on the Autistic spectrum and need constant 1-1 support in all areas of my learning ,medical and, physical life. I find it difficult to concentrate due to the amount of daily medication that i MUST take and there side effects ,this also magnifys my many daily difficulties. In the last few years I have developed curveture of the spine and with a result of this my posture has deteriorate. I sometimes have to use my wheelchair when outdoors as I become very tried and this very often leads to a seizure.
My DRAVETS SYNDROM is NOT all about my illness ...I love to spend time singing and dancing and making and baking things .A few others things i enjoy doing is watch my Dvd's on my Ipad, and teasing our dog..I have a very quirky sense of humor and became an aunty a few years ago .. JUST LOVE BABY Fara..
We needed to raise awareness and much needed funds towards research into finding a CURE for children who may be born with Dravets. The charity is committed to funding this important research to improve better life outcomes for our children and adults.
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