Epilepsy is more than just a Seizure!

www.gotchababe2015.co.uk

Epilepsy is much more than just a seizure. It’s a debilitating condition affecting the person and their families terribly. The ignorance and ambiguity from others still exists in the 21st century.

The drugs only suppress the seizures don’t cure them. 70% will have their seizures controlled. 30% like my son will have cocktails of drugs for refractory epilepsy, uncontrolled seizures. When the drugs don’t work what then? There’s so much red tape around the CBD Oil and Epidiolex. This needs to be addressed and given to kids and anyone whose seizures are uncontrolled by conventional drugs.

So there’s brain surgery. Which my son had, a Hemispherectomy of the right Parietal lobe.

The toxicity of all these AEDS affects everything and cognitive functioning.
Approximately 31 drugs and only about 3 of them my son has not tried for variable reasons.

Epilepsies, is not a new condition. It’s thousands of years old. It’s not a mental health condition it’s a physical condition.

Why is there still so much stigma evident.

Why is epilepsy portrayed as something sinister and wrong at times.

Yes, we have moved on a bit. What we haven’t done is eradicate the invisible illnesses criteria. Neurological conditions that sometimes cannot be seen by the naked eye are just dismissed.

Epilepsy needs media focus and plenty of it. We don’t have that. Cancer, Heart, Rhumatism all have media focus from their charities. My own personal opinion is, Epilepsy Charities need to get more focus out there in the global population. Epilepsy needs brought out of the dark ages and into the 21st century.

Our journey started 19 years ago. Has the medical management for others got any better? I don’t think so. The transition from Paediatrics to Adult Services Neurological Team was time consuming. You need that continuity of care.

I am my son’s voice, I have to be against all the odds he’s a fighter. There should not be in this modern age any reason for the ignorance that still prevails with some others. Epilepsy does not have a face or a voice until it’s you or someone you know! It doesn’t discriminate but discriminated against. It can affect anyone at any age from all walks of life.

Epilepsy does not have a cure to date.

Julie Clark.

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As a person suffering from Epilepsy, I wholeheartedly agree with you. The way people think of it as a shaking fit is harmful to us patients. That is basically the media coverage we get, like were being possessed.
We need to get attention and support because this is a serious matter. We patients shouldn’t always suffer from the side effects of anticonvulstants nor have to switch to alternative options because this has been going on for so long.
It needs a cure
Thank you for being your son’s voice. He is very lucky to have a mother who loves him so much she’ll fight for his rights. Most of us don’t have that.

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Thank you. We do need everyone with Epilepsy to have a voice. Don’t be shy and don’t hide away. Epilepsy is only part of someone not all of them. This needs to change now. All the complacency needs to stop. Stigma with Neurological conditions needs to stop. X

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Yes, when I have a seizure, it can knock me out for days, I may pee my pants, I lose words and concentration. It is not a fun time of recovery and its not over when the seizure is over. Thanks for sharing.

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It’s not fun at all having a seizure. In hospital with my son at the moment. EEG and Spect Scan. Keep strong lovely. Xx

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Did you leave feedback on doctors’ websites that doctors did not warn of the dangers of falling, drowning, SUDEP in epilepsy seizures? Such publicity and such reviews can force doctors to develop common clinical recommendations, information letters, infographic about Epilepsy Safety Measures. Do you have your graphic one-page version of all Epilepsy Safety Measures? https://gph.is/g/aK5l3oe #seizureSafetyMeasures #StaySafeSide

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Hi there,

Nice to hear from like minded people. I don’t just have epilepsy, I have FND, Asthma, possible autoimmune condition & Premature Menopause. I have had Epilepsy since I was 2yrs old. What about everyone else.