Turning The Triad Purple

http://www.triadlivingmagazine.com/Turning_the_Triad_purple.aspx

Turning the Triad purple

Institute works to help those with epilepsy lead normal lives

by Dakota Jacobi

For most people, driving a car or getting a job is normal. But for some patients at the Epilepsy Institute of North Carolina in Winston-Salem, these are milestones to a healthier and more independent life.

“The best part of the day is when a patient who formerly could not get a job because he or she had seizures now is a functioning individual in society with a job or a car,” says Dr. J. Christine Dean, co-founder and director of the institute.

The Epilepsy Institute of North Carolina is a private not-for-profit organization funded by donations, grants, and patients with medical insurance that provides assistance to residents in the Triad and around the world. A large percentage of funding also comes from federal programs such as Medicare and Medicaid, though it was not always this way.

“The institute was founded specifically to serve a population that was uninsured and underinsured at a time when hospitals were not able to provide free care for them,” Dean says.

The overall mission of the organization is to help patients with epilepsy and other neurological conditions better manage their lives and live as independently as possible through patient care, education, and research. The beneficiaries of course are the patients, and all profits are placed back into the institute for patient education and facility improvements so it can help diagnose and treat more people with epilepsy.

“I have always been an advocate of those who are underprivileged and underfunded, and have always wanted to make the contribution to society by helping those who cannot help themselves,” Dean says.

Making a difference
Dean — who has served as the institute’s director since it opened in 1992 — believes in a complete approach to treating patients. Services include everything from diagnosis and treatment to long-term care, education, and assistance with prescription medications.
“Treating each patient as an individual case study allows us to look at all aspects of his or her neurological makeup through EEGs, MRI imaging, neuropsychological testing, clinical interviews, and behavioral modification,” she says. “Without this kind of team approach, a misdiagnosis is likely, which could be catastrophic for the patient.”

What makes the Epilepsy Institute of North Carolina so unique is the fact that it has both a neurological unit that includes primarily epilepsy diagnosis and treatment and a behavioral unit that includes a neurologist, neuropsychologists, a social worker, and counselors. What’s also so unique about the facility is that Dean gets to bring her dogs to work with her every day.

“The dogs are a tremendous help,” she says. “They help out with children who are being tested and also help perk up nurses and doctors in the medical area.”

To help increase awareness of epilepsy and related neurological disorders, the institute plans to host a Motorcycle Benefit Ride in November, which also happens to be Epilepsy Awareness Month. It’s also currently planning a Turn Winston-Salem Purple party in the city’s downtown area.

“We at the institute are dedicated to improving patients’ overall quality of life,” Dean says. “When we are able to help someone turn it around, to be able to go out and do the things that most of us take for granted — drive a car, go to school, have a family — that is what makes it all worthwhile.”

Dakota Jacobi is a freelance writer based in Raleigh.

Epilepsy and the Olympics

With the 2012 Summer Olympics only a few days away, I wanted to see how many athletes that have been in the Olympics have epilepsy.

Of course you start online and Google gives you names starting back to ancient Greece.  I finally see people who play in the NFL or the Major League.  Then the gold, silver, and bronze medalist.  Think of how many minutes, hours, days, etc. it took for them to get where they are.  Walking around the track opening night waving their flag full of pride representing their country.  All the work they did isn't going through their mind right now. 

The names you read in the next few paragraphs will help you walk proud with them now that you know that they were able to overcome all of the pitfalls that epilepsy brings.  There are some great stories with happy endings and one that will break your heart.  One you will read and cannot believe that this happened here in the USA, if you think like me.

The first I have to mention is Florence Griffith-Joyner, or "Flo Jo" if you were around then to remember her nickname.  You might also remember her long fingernails.  She ran the 100m and the 200m dash.  Holds the record for both and won the gold medal.  She had seizures due to a Cavernous Hemangioma, which is a congenital brain abnormality.  She had a history of Tonic-Clonic Seizures and died by suffocation in her sleep due to a seizure.  Al Joyner was her husband, who was also in the Olympics, and her daughter Mary Ruth was on America's Got Talent this year and made it to Las Vegas.

Chandra Gunn had her first seizure when she nine years old.  She would see her mother cry about her epilepsy then she would tell her mother that she would be good.  After a while she began to see that it was not her fault but an important part of her life.  After high school she went to the University of Wisconsin.  There her seizures started to get uncontrollable.  They decided the problem was where they had not changed the dosage of her medication anytime that she had been taking it.  During her sophomore year, Chandra knew she was ready for hockey but her coach didn't think she was.  She hadn't told anyone about her epilepsy previously.  This taught her to be more open and upfront so that people can become more aware of epilepsy.  The USA hockey team won the bronze medal in the 2006 Olympic Games.  Chandra played goalie position.  She has won multiple awards and is the spokesperson for the Epilepsy Therapy Project saying that she wants people to live their lives to the fullest.

Dai Greene played football (soccer for us since he's British) when he was a teenager.  He had to quit playing soccer in his late teens due to a growing spurt that causes knee pain.  It is called Osgood Schlatter Disease.  He now runs the 400m hurdler for Welsh and Great Britain.  Dai had his first seizure at seventeen.  He doesn't take any medication; instead he doesn't drink any alcohol and makes sure he gets the right amount of sleep needed.  Several medals have been won and he will be Captain for the Great British Athletics Team.

Marion Clignet was diagnosed with epilepsy when she was twenty-two years old. She enjoys riding her bike.  After getting her license taken away riding a bike was her way of transportation.   Now competing as a track cyclist.  She was born in the US, but her parents are French.  When the US Olympic team felt that she was a risk due to her epilepsy, she joined the French National Cyclist Team.  With them she has two silver medals.  Her epilepsy did not get the best of her.  Every year she has a bike ride to raise awareness for epilepsy.

Maggie McEleny is also known as "Mad Maggie".  She is paraplegic and also has epilepsy due to a head injury when she was eleven years old.  Maggie has competed in four Paralympics.  Throughout those four she has won three gold medals, 5 silver medals, and seven bronze medals.

Paul Wade played football (soccer) for Australia in the 1988 summer Olympics.  He received player of the year in 1988 from Australia.  A supporter of disabled sports.  Due to his epilepsy, he helps by attending functions to support epilepsy awareness. 

After reading about the athletes that have overcome their epilepsy to compete in games with other athletes from around the world, let's stop and say what WILL I overcome today. 

My name is Roxanne Davenport and I have epilepsy.  I'm not an Olympic athlete.   I am an advocate for Epilepsy Awareness. 

Preventing Autism after Epilepsy

BOSTON, May 2, 2012-- Basis for the epilepsy-autism connection is found--and may be reversible with an existing drug
Early-life seizures are known to be associated with autism, and studies indicate that about 40 percent of patients with autism also have epilepsy. A study from Boston Children's Hospital finds a reason for the link, and suggests that an existing drug, already shown to be safe in children, could help prevent autism from developing in newborns who have seizures.
Led by Frances Jensen, MD, in the Department of Neurology and the F.M. Kirby Neurobiology Center at Boston Children's Hospital, the study suggests that seizures over-activate a biochemical pathway previously linked to autism, known as the mTOR pathway, and that this alters the fast-forming circuitry in infants' developing brains.
In a model, Jensen and colleagues showed that early seizures not only resulted in epilepsy later in life, but also produced autistic-like behavior. They further showed that disabling the mTOR pathway--by giving the drug rapamycin before and after seizures--prevented development of abnormal patterns of connections (synapses) between brain cells, reduced later-life seizures and eased autistic-like symptoms.
Findings were published May 2 in the online journal PLoS ONE.
"In children, there is overlap between epilepsy and autism, and epilepsy early in life has been linked to later autism," says Jensen of Boston Children's Hospital. "Our findings show one of probably many pathways that are involved in this overlap - importantly, one that is already a therapeutic target and where treatment can reverse the later outcome."
Specifically, the study demonstrated that a group of signaling molecules, known collectively as the mTOR pathway, shows increased activation after a seizure. This increased signaling - above and beyond the surge that normally occurs early in life - disrupted the normal balance of synapse and circuit development to produce epilepsy and altered social behavior. Rapamycin treatment inhibited mTOR signaling, reducing susceptibility to seizures and preventing seizure-induced changes in the synapses.
The study uncovers a new link whereby epilepsy and autism may interact in early development. Last December, Jensen and colleagues published a related study finding that seizures exaggerated excitation and synaptic strengthening too soon in a rat model, causing synapses to lose their plasticity -- their ability to reconfigure in response to input from the outside world. When they gave the rats a drug called NBQX, which blocks receptors associated with excitation, these problems were reversed.
The mTOR pathway is already known to be over-active in tuberous sclerosis complex (TSC) a genetic disorder treated at Boston Children's that often includes epilepsy and autism. The hospital is currently conducting a clinical trial of rapamycin in children with TSC.
"Our study suggests that even without tuberous sclerosis, seizures are inducing the mTOR pathway, and might on their own be contributing to the development of autism," says Jensen. "It appears that blocking the mTOR pathway briefly after the initial seizures may reduce the risk of later epilepsy and autism. This research also suggests that the fields of epilepsy and autism may inform each other about new treatment targets."

Please take a moment to visit our New Forum.  Start your own discussion

Epilepsy Institute of NC Forum

Mariel Hemingway visiting Winston Salem to speak about Epilepsy & Yoga Workshop

Epilepsy Institute of North Carolina presents a

YOGA WORKSHOP

with Mariel Hemingway

Thursday, March 29, 2012, 9:00 am - 12:00 pm

Graylyn International Conference Center, Atlantis Room

Please bring any props you may need – Limited space; make your reservations soon. All levels welcome!

Cost $50.00

Make checks payable by March 20, 2012 Epilepsy Institute of North Carolina/Mariel P.O. Box 24458 Winston-Salem, North Carolina 27114-4458—Please contact:  Rick Aaron @ 336-659-8202 or admin@eiofnc.org

Mariel Hemingway, Academy Award Nominee, Author, business woman, adventurer, and healthy living advocate. As the grand­daughter of illustrious author, Ernest Hemingway, Mariel was always destined to be well-known and publicly recognized. For over 20 years, she has been pursuing her passion for yoga and health and is now seen as a voice of holistic and balanced health and well- being.

..the brain is where you live

Abstract Search

(Abst. 3.088 ), 2011

Patient Assistance Program for Medication: Is it Cost Effective?

Authors: J. C. Dean, C. D. Allen, K. S. Gery
Instit: Epilepsy Institute of North Carolina, Epilepsy Institute of NC
Content:
RATIONALE:
Optimum patient care requires attention to many details, including non-billable services. The pharmaceutical industry has patient assistance programs(PAP) to provide medications at no cost to patients whom they deem eligible, but it is difficult for many patients to cope with specific PAP requirements and application variability. Most physicians do not have an in-house PAP program to assist their patients to apply for and receive these medications because of time constraints and costs associated with in-house assistance. Over time, patient instructions, phone calls, drug dispensing and government regualtion have increased to create a complex problem for physicians and their patients. The Epilepsy Institute of NC (EINC) is a not-for-profit comprehensive epilepsy service. We established an in-house PAP program (1999)to provide and evaluate a formal PAP mechanism to determine its feasibility. It is staffed by an RN coordinator to assure privacy for patients and individualized PAP management and record keeping.
METHODS:
We include all willing patients who have no insurance, meet various PAP income guidelines, are students,or are in the Medicare donut hole. We hired a single coordinator four 8-hour days per week.The job description requires the performance of 20 activities. We identify and track all communications over twelve months. We categorize functions of our in-house PAP program to determine cost according to function and establish a data base to record demographics, phone calls, personal interactions with patients and supply and store medications. We also record patient medication pickup,correspondence with companies, involvement of in-house staff, and patients leaving the program to obtain generics or insurance coverage. The PAP program began in 1999 and we tabulated results on 250 patients registered in 2010.
RESULTS:
Study Demographics:N=250; age 26; (17-65) years; gender: female(58%) male(42%).Number of medications: 1=85%,2=15%. Seizure type: 57% partial seizures,43% primary generalized; 25% of these were intractable. The number of communications over 12 months was tabulated: telephone calls averaged 6 per patient and the average call duration was 17 minutes, for advice, drug information and intervention. The coordinator spent 70% of time on patient registration, screening, advising and requesting medication with the company, returning cslls, providing forms, letters, prescriptions and recording in medical records. Patient intiated 40% of the calls, 15% of the calls required assistance from a physician or physician's assistant. The annual cost of the in-house PAP service was found to be $200 per patient.
CONCLUSIONS:
The drug assistance program requires a full-time knowledgeable staff member. Phone time, especially return phone calls, pill counts and identification, variation of forms all presented a challenging process for our comprehensive program. Although helpful to our patients, the in-house PAP program is not cost effective in our comprehensive epilepsy program. Alternative commercial patient assistant programs are a viable option, are patient generated and drugs are mailed to home.

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