Epilepsy Talk

Epilepsy Bill Of Rights | March 23, 2021

The Bill of Rights for People Living with Epilepsy was created for people living with epilepsy by people living with epilepsy and was spearheaded by The Epilepsy Foundation in conjunction with many concerned contributors.

If you don’t know about these rights, please read on…

The Bill of Rights for People Living with Epilepsy is designed to inform people affected by epilepsy about issues related to healthcare, health insurance coverage, life at school and life in the workplace. People with epilepsy are encouraged to be their own advocates in managing their healthcare.  However, any and all treatment decisions must be made together with their healthcare team. Those who are well informed will gain the greatest benefits.

The Bill of Rights for People Living with Epilepsy is not a legal document. These 10 rights are aspirational goals that the epilepsy community is striving to achieve. None of the information should be construed as medical or legal advice.  Recipients of this document should not make decisions or take actions based on the information contained in this document without obtaining appropriate medical or legal counsel from a qualified, licensed professional.

1. People with epilepsy have the right to be treated fairly and with respect.

2. People living with epilepsy have the right to receive comprehensive, understandable information about epilepsy and its treatment.

3. People living with epilepsy have the right and responsibility to be active members of their healthcare team.

4. People living with epilepsy have the right to know and understand all of the treatment options that are available to them.

5. Special populations of people with epilepsy (e.g., children, adolescents, women of child-bearing age, people with developmental disabilities, the elderly, etc.) have the right to ask about treatment and information appropriate to their specific needs.

6. People living with epilepsy have the right to understand all of the options and legal protections for accessing healthcare benefit coverage available to them.

7. People with epilepsy have the right to know that healthcare providers will hold personal and medical information confidential.

8. Children with epilepsy may have the right to receive special education and related services at school; parents have the right to advocate for such services.

9. People with epilepsy have the right to know that there are federal and state laws that may provide them with protections in the workplace.

10. People with epilepsy have the right to access help and support that will assist them in making informed decisions about living with epilepsy.

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  1. Reblogged this on Ken's Devotions.


    Comment by Kenneth — March 23, 2021 @ 9:16 AM

  2. Always having people ask me about our rights per being fired from job

    Liked by 1 person

    Comment by Risa kugal — March 23, 2021 @ 11:52 AM

  3. Indian tribe land no rights. Questions ask

    Liked by 1 person

    Comment by Daniel Oseguera — March 23, 2021 @ 3:13 PM

  4. The AAN, NIH, FDA, EFA & CURE should read all of these rights before their night time bed time. Does it really matter WHAT & HOW a seizure is caused from whatever, for any person to be accepted by any advocate or medical professional group or seizure advocacy to say to a person with seizures, that THEY have our back & support ? CURE & EFA have a lot to learn to accept what some of us have said for decades, & WHAT WE LIVE WITH is reality in OUR seizure world. Because they do not live it or see it, then they can dismiss it. NO, that will not & does not work from where I sit & stand.

    Liked by 1 person

    Comment by James D — March 23, 2021 @ 9:42 PM

  5. I have an accomodation at work to restrict my hours and days worked to a set amount so I don’t go over the edge. Do you think it is acceptable for my boss to have asked me to talk to my doctor to see if he’ll say I can work more…..? 🤔

    Liked by 1 person

    Comment by Hetty Eliot — March 24, 2021 @ 10:50 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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