Purple Day is a World Day for Epilepsy Awareness.

On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.

Epilepsy affects over 65 million people worldwide (more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined) but many in the general public know little about it and much of what they do know is incorrect. We need you to help us improve the lives of those with epilepsy by promoting epilepsy awareness and making sure that everyone has the facts.

As many of you know my Daughter Lily-Mai was diagnosed with epilepsy in November 2012 but in November 2013 after trialling many different drugs having numerous blood tests, eegs, ecgs and and MRI we were were told that Lily-Mai has drug resistant epilepsy and she was started on the Ketogenic Diet. This is a therapeutic diet that is high in fat, adequate in protein and low in carbohydrate with calorie control.

How the diet works

The diet appears to "mimic starvation" by using fat as an alternative fuel source for the body, producing ketones. The ketones can then have an anti convulsive effect.

The aim is for the patient to become seizure free, reduce/remove the anti-epileptic medication being taken (Lily-Mai is currently on three types of medication), wean the diet off after a period of 2 years and stay seizure free. Although this does happen for some it doesnt happen for all but there are other degrees of succes that we can aim for

• Reduction in number of and intensity of seizures
• Reduction of drugs and their subsequent side effects
• Increased alterness
• Improvement in behavioural problems
• Improvement in learning ability
• IMPROVED QUALITY OF LIFE!

After 4 months on the diet we have seen much improvement in many of these areas for Lily-Mai for example although not seizure free Lily-Mai has seen a reduction in her seizures from as many as 100 per day to around 12 per day. We have a long way to go but we are confident that this diet will go a long way to helping her.

Why am i talking about all this...well there is a charity called Matthews Friends their mission is;

• to make the ketogenic dietary therapy a treatment option available to all children and adults who may benefit from it (not all hospitals/centres offer the diet as an option)
• to raise public and professional awareness of the diet as a treatment option for epilepsy, metabolic and other neurological disorders.
• to provide parents and patients with upto date, evidence based information to support inofrmared decision making around ketogenic therapy choices
• to support family member and patients through their dietary therapy journey
• to support professional in their adminstration of dietary therapies
to support clinical research into ketogenic therapy to further understanding of how id works, who it works best for.

Mathews friends charity relies soley on the fund raising efforts and donations of their supporters, it is for this reason i would like to use Purple day to support Matthews Friends, in order that they may continue the fantastic work they do!

We were lucky that our hospital recognised this as a treatment option for difficult to control epilepsy, if it hadn't I don't know where we or more to the point, where Lily-Mai would be. Hopefully with your support Matthews Friends can work with other centres and encourage them them to add it to their list of approved treatments.