Listen Up Guys, I need Your Input??

[Elaine H]

Hi Guys

Ok, I have been given a fantastic opportunity, I've been asked to write an article, to celebrate the 60th Anniversary of the founding of Epilepsy Action here in the UK, and it is for the academic journal "Seizure" in this article, I must include perspectives from people with epilepsy on how they feel epilepsy stigma has "Moved from a global problem to a global solution" so please would you write and tell me what you feel about this, have things improved in your countries, have they got worse, giving examples if possible.

I know you guys always come up with the goods, especially for something like this, there will be a lot of emminent people reading this, and I hope it will throw some light on what is going on in the world of epilepsy, not just here in the UK, but worldwide,it's over to you guys, hope you will help me?

Lotsalove

Lainey xxxx

[Nakamova]

Hi Lainey, here's my two cents:

The outlook for those with seizure disorders is intermittent cloudiness, but with sunshine on the way. While there has been improvement in general awareness and understanding of epilepsy over the last decade, there is still a long way to go. Based on the stories of folks here at CWE, many continue to struggle with ignorance not only in the general public, but within the health care profession as well. Emergency responders, nurses, doctors, neurologists -- all those who should know better -- are often dismissive, rude, unresponsive, and dangerously uninformed. In addition, the treatments people with epilepsy can expect to receive tend to come at great expense both financially and in the way their accompanying side effects impact quality of life.

Now for the sunshine: The variety of treatment options (surgery, implants, meds) is greater than it has ever been. There is an enormous amount of research going on, abetted by new techniques in brain imaging. And certain "alternative" approaches (nutrition, neurofeedback) while still marginalized, are making tiny inroads, not least because of the anecdotal successes reported here at CWE and elsewhere.

Which brings me to a last "ray of sunshine": The Internet has made possible the exchange of information and support on an unprecedented level. The speed and ease with which we can connect to one another allows for "global solutions" that can be initiated at a the most local level. A single individual (such as Bernard) can set up a forum that touches many thousands, and makes life with epilepsy a little easier for us all.

[knothing]

A generational leap forward in understanding--

My uncle was diagnosed with seizures as a child in the 1950's. As a pre-teen he was always looked after and never allowed to work hard to earn extra money to do anything for fear of another grand mal. My mother would work hard to earn money to go to a pool and when she went her mother would hand her money for him. She would take him but if anything went wrong she was held responsible. He was never treated equal but was given everything to look equal. When he reached high school he had been seizure free for for a decade and was allowed to play football on the bench. He saw some activity on occasion and started learning a trade. After graduation he became a barber in the mid 1960's and made a go of it. One grand mal later and then word got out about him having epilepsy. A short time after that his career ended faster than it began and on to disability he went. They found a drug that worked and he went seizure free for over 20 years but the damage had been done. He lost a career, his friends, and never dated again. His mother never let him work and he lived at home until he died at the age of 61 from a heart attack. He was held back his whole life from life and it did more harm to him mentally than any of his seizures ever did.

I fell down a flight of stairs hitting my head on a concrete floor at age 4. Irony is that it was in the house my uncle spent his last 37 years living in. I had a few grand mal after the injury but the doctors said it was head trauma only not epilepsy. It was not until I was in my late 30's before the grand mal seizures returned. Doctors never said to stop living or that I was now disabled. I take meds and for now it seems control has been obtained but you never know until the next one. My first neurologist said I have epilepsy but I still need to get up, go to work, pay my bills, and most of all live my life. Sure I had to make some changes but not like my uncle. I have a life but when I fell if the seizures had kept up I would have been put in the same boat as him in the 1970's.

To see a life that could never get fully going compared to mine now the world has truly changed. I still run across the attitudes he faced and when I do I have choices he did not.
1. Educated - we know so much more every day and he never had
2. Conform to the old attitude - not going to happen but we have a choice
3. Finally just move on and ignore them because we can now where he could not


I hope it helps but I am not a write just someone who tries

[Bernard]

... I must include perspectives from people with epilepsy on how they feel epilepsy stigma has "Moved from a global problem to a global solution" ...

I don't have epilepsy (my wife does), so I don't know if the parameters of your project are going to discriminate against me or not ( ).

Epilepsy stigmas stem from ignorance. I believe that with improvements in communication technology, the world has become a much smaller and more connected place. Examples of epilepsy stigmas/ignorance in the media have provided opportunities to educate and raise awareness (and hopefully fundraising for research and support programs).

[Endless]

Lainey,

Yeah, what Nakamova said.

I think that most of the world is still in the dark about epilepsy. In many countries, especially eastern europe and russia, they still put people with epilepsy in institutions. In our own U.S. even medical professionals are sadly lacking in basic knowledge about epilepsy. I experienced doctors and psychologists who didn't know the basic symptoms of temporal lobe epilepsy seizures, and gave me various diagnoses of stress to menapause, until I found an epileptologist who was very knowldgable in epilepsy and immediately knew the correct diagnosis. Now I'm on medication that for the most part, has the seizures under control. We need greater education of health professionals, worldwide, so the correct diagnosis can be delivered right away.

I am excited by the global research being done now into the root causes of seizures, including mapping of related human genomes, and non-invasive imagery including PET scans to locate the origin of seizures. This will make it possible to pinpoint seizure location in the brain and the cause of seizures without painful and invasive methods, and as it becomes more common and the cost reduces over time, it will be available to more people worldwide.

The research into the treatment of seizures is very exiting, including the German research on the regeneration of brain tissue using stem cells (http://www.medicalnewstoday.com/articles/9123.php), and the use of non-invasive methods like Transcranial Magnetic Stimulation.
http://www.ncbi.nlm.nih.gov/pubmed/8420691

epilepsy TMS definition - Google Search

epilepsy TMS definition - Google Search

,
The possible use of the Cyberknife to treat seizures is also exciting. It is invasive, but doesn't require actual surgery:

If this path continues, some day seizures will be treated without drugs, and without invasive methods. Someday seizures will be diagnosed easily and as a matter of course by primary care providers, and the treatment will be as easy as splinting a finger. Epilepsy will be no big deal.

[PhylisFeinerJohnson]

When I was a child -- 45 years ago -- my parents wouldn't even say the "E" word, although one was a pshychologist and one was a surgeon. I was shunned and treated like damaged goods. Told that "I'd never amount to anything."

Well, they were wrong. I did get a life and became a professional writer. I then started my own successful freelance advertising business and one of my largest clients dealt with health & wellness.

We talked about epilepsy all the time. My other clients knew I had epilepsy, so do all of my friends. They are warm and accepting and would never think to shun me.

When I almost died two years ago (endless cascade of seizures, heart atttack, coma, etc.) my husband's family and my best friends rallied to my side. And when I cane out of my coma, they were still there...with love, care and support.

And so I gave up my freelance business to become a full-time epilepsy advocate. My goal is to show the uninformed and misinformed the truth of what epilepsy is.

I go to service groups, business meetings and school health fairs. When I tell the story of my first seizure they are amazed. And they listen, because they want to learn.