In my 21 years of living with Epilepsy I h... - Epilepsy Action

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In my 21 years of living with Epilepsy I have only just discovered that it is a disability

Mo-lil profile image
5 Replies

This is my first post, I suffer with epilepsy and i am really struggling at university because of it. My parents told me to lie to the doctors to say I don’t suffer with them anymore so they could get me to drive as they don’t want me to rely on them. I have suffered in silence and have seeked therapy and help but haven’t got anywhere with it.

can someone point me in the direction of being recognised with this as a disability, and where I can seek help other than my GP (which is so unhelpful).

I really need help! Thanks all.

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Mo-lil profile image
Mo-lil
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5 Replies
Shorehampete profile image
Shorehampete

Hi Mo. So sorry to read your story it must be so hard for you not having anyone to talk to about your epilepsy. If you are living away at university maybe you could register at a local GP practice and explain to them what's happening. They will be able to prescribe some medication and refer you to see a neurologist and start getting the help. I was diagnosed 4 years ago and certainly wouldn't have been able to cope with this without the support of my wife.Please try this as it may give you the help you need.

All the best Shoreham Pete

wxy123 profile image
wxy123

Epilepsy is a recognised disability and you should be able to get a free bus pass. Shoreham Pete's suggestion of registering with a local GP is so good. Do get a referral to a neurologist and also get to see an epilepsy nurse. They are great at dealing with the everyday practicalities. There is probably an epilepsy support group around, and it is so helpful to meet with other people dealing with the same problems. Good luck with it all.

EpilepsyAction1 profile image
EpilepsyAction1PartnerEpilepsy Action

Hi Mo-lil

Sorry to hear you are struggles. As others have suggested, as you are still having seizures, it would be best to have a review of your treatment.

If you are not under a specialist for your epilepsy, and you aer not happy with your family GP, it may help to register with a GP at your University.

epilepsy.org.uk/info/treatm...

If you are struggling at University due to your epilepsy, talk to your University. All Uni's should provide support for students with a disability that affects them at University. We have more information on our website epilepsy.org.uk/info/educat...

If it would help you to talk to one of us, Advice and Information Officers, on the Epilepsy Helpline (freephone) 0808 800 5050. Callers to the Helpline will receive a friendly welcome and can discuss any concerns confidentially. Our helpline is open Monday to Friday 8.30am-5.00pm and Saturday 10.00am-4.00pm.

Finally I wonder if you would find the Epilepsy Space section of our website helpful. Its designed to help 16-25 year olds manage their epilepsy. It’s been created with young people and reviewed by epilepsy nurses. It contains topics and content that young people said were important for them: Managing their epilepsy, work and studying, going out, having a social life, family and relationships. There’s lots of epilepsy facts, tips and stories from young people sharing their experience.

epilepsyspace.org.uk/

Take care

Regards

Diane

Epilepsy Action Helpline Team

car67 profile image
car67

Hi

Sorry to hear you have been suffering, epilepsy is covered by the equality act and is also a recognised disability. There is a lot of help out there , you can claim for PIP , free bus pass and in some boroughs freedom card. Also your prescriptions are free. I wouldn’t risk driving , I believe you have to be seizure free for a year, not completely sure, dvla or gov.Uk wil give you full details. Good luck.

Ronamac profile image
Ronamac

Hi Mo-lil,

I’m sorry to hear you are struggling with all this as well as living away from home for uni. Many local councils will have a welfare rights officer (or the local Job Centre) who will have someone who can advise on benefits you would be entitled to, PIP etc. As others have said, you will qualify for free bus/train travel.

Register with the GP where you are studying, I found when I changed drs that my new GP was far more helpful than the one who had known me since I was diagnosed.

When at school I was given extra time for exams, had someone sit with me & a break 1/2 way through to ensure I was ok. Be sure to tell your lecturers about your epilepsy, that way they will be more aware of your needs & what will work best for you.

I would strongly recommend that you don’t drive, especially if you have lied about your last seizure to the Doctor. This will most likely void your insurance cover (if you were to be in an accident) and cause a whole host of issues for you in the long run. You can apply for a driving license only when you have been seizure free for 12 months.

I hope you get the help & assistance you need. All the best Rona

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