May 2014 Newsletter

THE MISSION of the Dr. Alfonsina Q. Davies Epilepsy Foundation is to improve the lives of those afflicted through increased research efforts, a better treatment modality and the elimination of the stigma and prejudice that surrounds this disease in all facets of public life.

Give a Gift of Life and Health. Please DONATE ALL YOU CAN for those who are suffering and dying daily from this horrible disease. Anyone at any age can have a seizure!!!

Joshua’s Story

He was a vibrant wonderful young man of 26 who died of SUDEP. He developed seizures when he was 20 years old, after he was diagnosed with encephalitis. He apparently had come into contact with a rabbit infected with a virus which also causes seizures in rabbits.

He was admitted to the hospital and was in an induced coma for 26 days after which he had to learn to walk and speak again. Soon after that he began having tonic-clonic (grand mal) seizures four to five times a week.

Joshua was finally admitted to the University of California, San Diego where Dr. Tecoma ordered a MEG Test (Magnetoencephalograph). This test showed that Joshua’s seizures emanated from both hemispheres of the brain and thus surgery would be out of the question. A few months later a Vagal Nerve Stimulator (VNS) was implanted on his chest to help stop or prevent some of the seizures. It did not work and Joshua continued to have all types of different seizures.

In spite of the pain, disappointment and continuous frustration, Joshua attempted to go to college and seek employment. Due to the number of seizures he was having he was unable to complete any of his classes and when looking for employment he was treated as if he had some horrible contagious disease. Most folks with this neurological disorder cannot find employment unless they LIE AND CONCEAL THE FACT THAT THEY HAVE EPILESY. (Our daughter, Dr. Alfonsina Q. Davies who also died from SUDEP had to lie all her life about her condition and live in secrecy in order to keep her jobs).

Joshua became very depressed and despondent as most folks who suffer from this disease. Life became very difficult for this young man. There was little help medically and none at all for the psychosocial trauma that he was experiencing. The inability to get any kind of a job, The constant discrimination, isolation and stigma made him very sad. He was forced to live in several independent living homes and after years of trying he eventually qualified for Medi-Cal and his late mother’s SSI. The struggle to get those services for him was unimaginable.

His seizures continued but were somewhat controlled and Joshua once again planned to go back to college and pursue his love of golf by taking courses in the sport he loved. On the evening of January15, 2014 Joshua had just run out of his medications.

He had turned in all his paper work to Medi-Cal Insurance, but nothing was finalized after months of trying to get his coverage. He desperately needed the medications so he went to a pharmacy to get them. Unfortunately he did not have the $700.00 needed for the prescription. His father immediatelly contacted the pharmacy and offered to pay with his credit card. The pharmacy refused, it was not in the guidelines. Father and son spoke on the phone that evening, said good night to each other and Joshua said, “don’t worry Dad, I will chill out until tomorrow”. Joshua went home, had dinner with his roommates and said he would join them for breakfast in the morning.

Morning came but Joshua was no more, he had passed away during the night. ANOTHER VICTIM OF SUDEP. Was it the lack of medications? No one knows for sure, but perhaps if he had had his medications, he would be with us today. What is obvious is that nothing like this should ever happen in a country like ours. That pharmacy should have provided the young man with a three day prescription which he would have been able to afford. How very sad that a young life might have been lost because of a few dollars and heartless guidelines.

P.S. We have been in contact with Joshua’s father, his doctor and the nurse who attended him. All of us agree that this can not happen again. When our Nina’s Epilepsy Treatment Center becomes a reality we intend to make sure that there is a fund established for such emergencies. We are told that there are several cases such as Joshua’s in San Diego alone on a yearly basis. How many more Joshua’s are there nationwide who have a disease that is so vastly ignored?

Epilepsy: A New Definition

The International League Against Epilepsy (ILAE) published a new definition of Epilepsy in the April Issue of Epilepsia, their official publication.

The new definition is important for two distinct reasons.

First: it now classes Epilepsy as a disease, whose symptoms are the seizures. According to Dr. Robert Fisher, Phd, MD, “A seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures.”

Second: under the previous definition someone has epilepsy where there have “been two unprovoked seizures more than 24 hours apart.”

The new definition describes with new clarity when a person has epilepsy, and when that person after several years of being seizure free no longer is considered to have epilepsy. This is a very important clarification which may help bring epilepsy into the light and do away with the stigma that surrounds it.

For a more thorough discussion, Read the full article

Dr. Gary Mathern was on the committee that produced the new definition. He is professor of pediatric neurosurgery at the David Geffen School of Medicine at UCLA and director of the Pediatric Epilepsy Surgery Program at Mattel Children’s Hospital UCLA. Dr. Mathern is also co-editor-in-chief of Epilepsia, the journal of the International League Against Epilepsy

Next Newsletter – JUNE 2014

In the June 5, 2014 Issue: The psychosocial aspects of epilepsy will be discussed. Dr. Joel Wade, PhD. has written an article addressed to those with epilepsy,especially for this issue. It is titled: HIDDEN STRENGTHS. Go to his website MASTERING HAPPINESS

Quick notes for May 2014

Look for us at the Money Show at Caesars Palace in Las Vegas, May 12-14, 2014. We will be with the VOXOX both. It is a good venue for talking about Epilepsy and the Dr. Alfonsina Q. Davies Epilepsy Foundation.