Epilepsy Talk

Epilepsy Bill Of Rights | November 5, 2015

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.

The Bill of Rights for People Living with Epilepsy is not a legal document. None of the information should be construed as medical or legal advice and any and all treatment decisions must be made together with a doctor.

For further information and details of each individual provision in The Bill of Rights, go to: http://old.epilepsyfoundation.org/programs/loader.cfm?csModule=security/getfile&PageID=46867

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  1. Phylis. I think we have communicated before, but…

    As a sufferer of epilepsy, I am very fortunate to have insurance coverage, both Medicare and personal, to cover my needs. I am also fortunate to have zeroed in on a fantastic neurologist who not only identified that I was in fact dealing with epilepsy (after 8 years of trying to figure out what was going on). Still, we have friends who have an epileptic daughter and have no insurance coverage or the finances to even cover the cost of medication. They are definitely in a dire situation. Anything that could be enacted on behalf of sufferers of epilepsy, regardless of age, needs to happen.

    FYI. I was cross-trained in journalism, graphic design, and photography. I diligently work to keep those skills alive (think I’m having an acceptable level of success). I do my best to keep active as a community volunteer—member of the Board of Directors of our OA, administrator of the OA’s website, e-blast communications (all including photos/graphics), as well as administrator of the Association’s FB page. I am very fortunate that at least a number of the residents of our community understand that I am epileptic and are extremely supportive. If you want to take a look at what I’m still capable of doing, it’s http://www.blockhousecreek.org or on Facebook, Block House Creek Owners Association (please ignore some of the ridiculous comments some neighbors make because they don’t want to comply with Deed Restrictions). Location: Leander, Texas.

    I am ready to step up to the plate and do whatever I can to support any communication effort that supports both children and adults who suffer from epilepsy. If you would like to take advantage of my career skills, let’s talk (512-925-5683). I’ll contribute in whatever way I can. If you wish to call, please do e-mail me your phone number in advance (pamlabee@sbcglobal.net) so I don’t assume your call is a solicitation and immediately delete.

    Last FYI. I was scheduled for RNS surgery on Dec. 1 Much to my dismay, the implant has now been rescheduled for Feb. 2.

    Long message I know, but If I can help our cause in any way, then I’m ready to go!

    Liked by 1 person

    Comment by Pamela Phillips — November 5, 2015 @ 10:14 PM

  2. I think it would be great if you could advocate on your behalf.

    Whether it’s a fundraiser — awareness talks at local business associations, schools, communities — all of these can be very powerful.

    And you sound like you would make quite a persuasive advocate.

    Also, the local Epilepsy Foundation has both materials and suggestions for Epilepsy Awareness Month.

    There’s lots out there. For example:

    Epilepsy Advocacy Letter


    Epilepsy Abuse and Civil Rights


    I’m sure you can think up more and better things.

    The joy is in doing and making an impact. You can do exactly that.

    Good luck, Pamela!


    Comment by Phylis Feiner Johnson — November 6, 2015 @ 8:09 AM

  3. Phylis Feiner Johnson, with regard to point #4, what would it mean if someone with Epilepsy responded better to natural remedies than to prescription medication? Would this mean that regular medications were just ineffective or that the patient could not tolerate the effects very well?


    Comment by Jeffrey Liakos — September 7, 2018 @ 7:08 PM

    • I think the key is a combination of the two.


      Comment by Phylis Feiner Johnson — September 8, 2018 @ 10:16 AM

      • Phylis Feiner Johnson, if you got advice from a Doctor about medicinal herbs that contradicted anything that researchers of said herbs have found, whose advice would you abide by-that of your Doctor or that of the people who study these items? I think that both opinions should be solicited.


        Comment by Jeffrey Liakos — September 8, 2018 @ 11:51 AM

      • I agree.


        Comment by Phylis Feiner Johnson — September 8, 2018 @ 12:51 PM

  4. Phylis Feiner Johnson, any medical condition that obviously can be fatal if not treated appropriately is worth taking seriously.. Having said that, if I was a doctor, I would look for more natural means whenever and wherever possible. Assuming that a person with Epilepsy was deemed stable enough to not need medication, maybe not nearly as much medication, that person could probably consider more natural remedies as an addition or an alternative.


    Comment by Jeffrey Liakos — September 12, 2018 @ 4:05 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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