Epilepsy Institute of NC info@eiofnc.org 336-659-8202

“GIVING TUESDAY” FOR EPILEPSY

The Epilepsy Institute of NC is a nonprofit organization.  A physician there sees patients that can not afford office visits and can not afford the epilepsy medication.  The office barely broke even last year.  She, Drseasonofgiving_logo_13. Dean, needs your help.  She has a heart of GOLD.

“Giving Tuesday” comes around every year.  Always the Tuesday after Thanksgiving.  A great way to start the Christmas Season.  The Epilepsy Institute needs your help.  Think about how we give clothes, toys, and food to people over the holidays.  They also need epilepsy medication and doctor’s appointments.

Thank you from the bottom of my heart,

Roxanne

EPILEPSY AWARENESS MONTH

Every disease, celebration, or movement has an awareness month and its own colored ribbon.  Purple is the color for epilepsy.  Congress declared November as National Epilepsy Awareness Month in 2003.

I have had epilepsy for over twenty years.  I didn’t know about November or purple ribbons until after a life changing experience.  That experience made me a true Epilepsy Advocate.  A lot can happen in one minute.

In 2008, my insurance company made me change to generic epilepsy medication.  The company that makes the generic form of that brand name still helped control my seizures.  Unfortunately there is many generic brand epilepsy medication.  All generic brand medication companies charge different prices and are made slightly different.  The pharmacy where I got my epilepsy medicine switched companies to another generic brand company.  This company’s medication didn’t cost as much as the one that helped control my seizures.  Since it was cheaper, the pharmacy decided to buy the cheapest generic medicine.  I had to take the cheaper brand in October 2009.  The cheaper brand caused me to have a breakthrough seizure while I was driving.  I had been seizure free for seven years.

The seizure I had while driving is my life changing experience.  My daughter was in the front seat.  Her ankle was broke into many pieces.  After 5 years, and having surgery every year, her ankle is fused.  She was 18 when her ankle was fused. She is 20 years old now and has arthritis in her ankle.

I started talking to people online.  I have made friends online because of epilepsy.  I learned more about Epilepsy Awareness while I was taking care of my daughter after her surgery.  It took me a long time to write about that day.  I call myself an Epilepsy Advocate because everyone needs to be informed about epilepsy!

Please wear purple or a purple ribbon this month.  You will help people become more aware of epilepsy.

Thank you everyone.

 

HAPPY VETERAN’S DAY

Veteran’s Day is a holiday to say thank you to our men and women who served and are still serving in the military.  November 11 was picked to remember the end of World War I in 1926.  Other countries also remember November 11, France, Britain, Australia and Canada.

Due to the web site, http://www.history.com/topics/holidays/veterans-day-facts,

  • There are 21 million military veterans in the USA
  • 16.1 million living veterans served during at least one war.
  • 5.2 million veterans served in peacetime.
  • 2 million veterans are women.
  • 7 million veterans served during the Vietnam War era (1964-1975).
  • 5.5 million veterans served during the Gulf War (representing service from Aug. 2, 1990, to present).
  • Of the 16 million Americans who served during World War II (1941-1945), about 620,000 are still alive.
  • 2 million veterans served during the Korean War (1950-1953).
  • 6 million veterans served in peacetime.
  • As of 2014, 2.9 million veterans received compensation for service-connected disabilities.
  • As of 2014, 3 states have more than 1 million veterans in among their population: California (1.8 million), Florida (1.6 million), Texas (1.7 million).
  • The VA health care system had 54 hospitals in 1930, since then it has expanded to include 171 medical centers; more than 350 outpatient, community, and outreach clinics; 126 nursing home care units; and 35 live-in care facilities for injured or disabled vets.

Let’s don’t forget our military.  Say thank you to someone you see in uniform or wearing a cap that has the name of the war they fought in.

 

EPILEPSY INSTITUTE YEARLY DOG SHOW

On October 8, 2016 the yearly dog show occurred during the hurricane.  The Winston-Salem Fire Department, 4 dog owners and their dogs, our support group and the office attended.  While the show was cancelled due to the weather, the staff planned for next year’s dog show.

The donations, $2,300, given to the Epilepsy Institute of NC was donated to the food donation of the Salvation Army and Good Samaritan charities.  Helping the people affected by hurricane Matthew.  Thank you Strouse House, Dixie Classic Fair, and Blue Seal Dog Food for your donations.

To donate to the Epilepsy Institute of NC, please join We-Care.com.  We-Care joined Amazon to give percentage of purchases to us when you order online.  Also check the home page and choose Donate.  Thank you

SUDEP (Sudden Unexpected Death due To Epilepsy) AWARENESS DAY

October 23rd is Sudden Unexpected Death due to Epilepsy Awareness Day. (SUDEP)

Epilepsy can be a cause of death.  SUDEP is the leading cause of death in patients with epilepsy!  More than 1 out of 1,000 people with epilepsy die from SUDEP.  If seizures are uncontrolled, the risk increases to 1 out of 150.  This effects young adults with uncontrolled epilepsy more than children.  With research the probable causes of death in SUDEP are problems breathing, heart rhythm, and the function of the brain that occurs during a seizure.

Current research into the possible causes of SUDEP is focusing on problems with breathing, heart rhythm and brain function that occur with a seizure.

The criteria used to determine whether a death is due to SUDEP are:

  • The person has epilepsy, which is defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly and during normal activity (often during sleep).
  • An obvious medical cause of death could not be determined at autopsy.
  • The death was not the direct result of status epilepticus.

More information about SUDEP can be found at, http://www.dannydid.org/epilepsy-sudep/about-sudep/                        and http://www.dannydid.org/assets/1/6/SUDEP-Media-Backgrounder1.pdf.

 

I knew three people that died because of SUDEP.  More research is needed for epilepsy.  There are more people affected with Parkinson’s Disease, cerebral palsy, multiple sclerosis, and muscular dystrophy than epilepsy.

 

For more information about risk factors and prevention, check the Danny Did Foundation’s web site.  http://www.dannydid.org/about-us/

TRAUMATIC BRAIN INJURY AND EPILEPSY

We always correlate traumatic brain injury with war veterans, car wrecks, etc.   A Neurology Community member on Google+ posted an article from the HUFF POST.

Changing A Common Belief About Brain Injury http://www.huffingtonpost.com/sandra-bond-chapman/changing-a-common-belief-_b_7588400.html

I blog about my life with epilepsy and included a time that I called “Dr Jekyll and Mrs. Hyde”.  In 1997 I had surgery to remove an area called mesial temporal sclerosis.  The year after that I don’t remember.  I can’t tell you about Christmas.  I had surgery when my daughter was one, so she couldn’t remember it. Unfortunately I don’t remember her two year old birthday party.  They said the memory loss was because of the anesthesia.

Now, eighteen years later I had a sleep study.  The neurologist that talked to me afterwards asked if I had ever been told about TBI or PTSD.  I said, “Nooo, whyyy”?  He explained.  Then everything started making sense.

I know why my attitude on life is different.  I am guessing that after going through pre-surgery testing, the surgery itself,  and the horrible life changing year afterwards my brain had time to recuperate.  As the article said,  “potential for improvement is far greater than previously believed possible.”

My husband asks me often if I am o.k. when I don’t get upset at times when other people would.  My brain must have re-routed that feeling to where I am more optimistic.  It took one year for me to say instead my cup is half-empty, to half-full, and now that my cup “runneth over”.

I hope one day the TRAUMATIC BRAIN INJURY research will include brain surgery patients.

3D EPILEPSY MEDICINE

I was skeptical when I read that one of the epilepsy medicines I take is being made now by a 3D printer.  That’s ridiculous!  After knowing personally the difference between brand name medication and generic medication.  How can medicine be produced by a printer?

I needed more information.  One article wasn’t enough.  I found “ZipDose Technology”.  This technology uses aqueous fluid and layers of powdered medication to make a water-soluble “matrix” that disintegrates quickly with just a sip of fluid.  It doesn’t us compression.  Without compressing, this lets the doctor increase the dosage in just one pill.  This also means that dosage will be correct in every pill!

Wait, what did I just say?  THE DOSAGE WILL BE CORRECT IN EACH PILL!!  That’s what the article posted.  The article actually said, “precisely dosed”.  This is great for helping epilepsy and fighting generic medicine.  The FDA is also approving 3D printing medication.    For more information, here is a great article.

http://www.washingtonpost.com/news/innovations/wp/2015/08/11/why-it-matters-that-the-fda-just-approved-the-first-3d-printed-drug/

My question was answered, 3D looks like it will help with making epilepsy medication dosage correct in each pill.

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