Wednesday, February 8, 2012

Craft Purple for Epilepsy

This is Sophie's Story - based on a book we made for Sophie 2 years ago when she was first diagnosed.

Our daughter Sophie was officially diagnosed with Epilepsy at five and a half years old.   Sophie has  Panayiotopoulos Syndrome and Absence Seizures.   Sophie had her first big seizure at kindy when she was four and a half, this seizure was put down to a febrile convulsion.   The following year she had two more big events in a month, one in a swimming pool during a swimming lesson and one at home playing in the garden.    Sophie had an EEG that confirmed abnormal firing in the brain and the Doctor also confirmed that Sophie's frequent daydreams were absence seizures.   I remember watching Sophie when she was about two and wondering was there something unusual going on, by the way she would stare off into the distance and daydream.   With hindsight these daydreams were the same sort of absence seizures Sophie still has now.

Getting the medication balance right for Sophie has been tricky to say the least and she has experienced some extreme side effects.   I am happy to say that we now have a much better understanding of her seizure type, what works for her and what doesn't.   Sophie still has many absence seizures a day but has been able to return to school and hasn't has Panayioyopoulos seizure for over a month.

Epilepsy affects over 50 million people worldwide, which is about 1 in 100 people.  That’s more that multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.  It can affect anybody at any time of their lives so why isn’t anybody talking about it…?

               You can help by Crafting Purple.  What ever you make, make it in PURPLE.

                                              Click this button to craft

                               Or you can make a donation by clicking here.  

Really useful Epilepsy links, click on a logo:

Or Google Epilepsy to find an organization near you.

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