QUICK TO COMMENT ABOUT EPILEPSY


An acrylic painting done by me titled "Hidden"
(Look for the hidden epileptic face)

Ever so often whenever I mention to someone I have epilepsy, almost all the time, I get this similar reply, " Oh! Epilepsy! I know what's that and what is the big problem/issue? You fall down for a while, bite your tongue while saliva foam from your mouth and within minutes you are up on your own, back to your normal self ". Having said that, these people tend to give me wondering and puzzled stares as if to tell me indirectly I shouldn't be worried or upset over having epilepsy. It's a minor and no fuss thing. These people think there is only one type of seizure which is tonic clonic (grand mal) that always have someone falling down in a state of seizure. They are definitely wrong because there are so many different types of seizures that can be categorized and sub categorized under grand mal and petite mal.

The whole thing boils down to these people not being in my medical shoes. And then they most probably never have thought of what if one day they themselves should develop epilepsy out of the blue. By not having epilepsy themselves, it is so easy for them to turn a blind eye and care less about the sentiments of people with epilepsy (PWE) and their carers. Must these people wait to be stricken with epilepsy in order to start finding out what it is all about? And having to live with epilepsy themselves to have a better knowledge and understanding of their fellow PWE?

These people should not be reckless to simply comment about something they have shallow or wrong knowledge about. I am always irked and put off by these peoples' insensitivity towards the feelings of PWE. If they know nothing about epilepsy, have a lot of uncertainties about epilepsy or have little to comment about epilepsy, it is best they learn to ask a PWE what epilepsy is all about. And if they can, bear the word "Epilepsy" in mind and do some finding and reading about it before they go round telling and describing wrong things about epilepsy.

Epilepsy awareness is so lacking in almost all places of the world. When PWE together with their carers, doctors, health experts and epilepsy advocates are trying their hardest to promote and increase awareness of epilepsy, NO THANKS to these misleading and heartless people who are wreaking much havoc to the success rate of epilepsy awareness.









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Advanced acoustic monitor detects breathing difficulties

Epilepsy sufferers who risk suffocation during a seizure could be saved with a new small acoustic detector worn on the neck.

The device, which has been developed through the work of Dr Esther Rodriquez Villegas of Imperial College and Prof John Duncan of University College London, is being launched through a new Imperial Innovations venture.

According to Ervitech, the company behind the device, the instrument addresses the limitations of earlier acoustic breathing monitors by removing interference from background noise, speech and internal sounds such as heartbeats. These advances allow Ervitech’s device to achieve similar accuracy to other techniques that use expensive and bulky monitoring equipment.

Prof Duncan explained the 2cm by 1cm device, which is currently in prototype stage, incorporates a small microphone that detects airflow up and down the trachea of a patient. A microchip processes the acoustic signal and determines whether or not there has been a breath. A small radio transmitter beams the information to a base station that could be on a bedside table.

‘The signal could also be used to alert any number of mobile phones,’ he said.

Prof Duncan, who is a researcher of neuroscience, added that the prime motivation for the device was finding an appropriate health monitoring solution for patients with epilepsy. ‘We wanted to have a device that could reliably detect apnoea and to be able to do that in and out of a hospital environment,’ he said. ‘For some conditions, particularly epilepsy, somebody may have a sudden interruption of breathing that may kill them unless somebody’s on hand to resuscitate them.’

According to Prof Duncan, the device would be particularly helpful at night because it could alert a sufferer’s caregiver or partner, who might otherwise be asleep, if there is a problem.

The Ervitech team is currently conducting clinical trials of the device with patients who suffer from breathing disorders such as sleep apnoea. Prof Duncan said: ‘We’re just making sure it can detect different types of apnoea and also that it doesn’t have false positives.’ Assuming the results are comparable to ‘gold standard’ hospital breathing monitors, Prof Duncan said the Ervitech device could be widely available within two years.

Read more: http://www.theengineer.co.uk/advanced-acoustic-monitor-detects-breathing-difficulties/1004884.article#ixzz0zrJHTRg4







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IT IS IMPORTANT TO BE PART OF AN EPILEPSY SUPPORT GROUP

I recall the good and happy days when I was an epilepsy support group co ordinator in our local epilepsy society. My friends and I looked forward to meeting up, telling and updating each other about our epilepsy condition. We were a small group which made sharing very easy and quick. We uplift and inspire each other to live life bravely and normally, doing everything as any normal being would want to despite our odds.

We talked constantly about the challenges that epilepsy threw on us and how each one of us intended to outdo and defeat it successfully. We also had our once a month small "eat-out" gathering at our regular gazebo located in a park. Each of us brought our contribution of food, snacks and drinks. At the shady green scenic spot, we were a merry lot. Sweet, splendid, happy and meaningful moments were exchanged, shared and treasured in our minds and hearts.

I have not been around in the epilepsy support group for coming close to 3 years because of family commitments but the moment situation permits I will be running back to it again.

Are you part of any epilepsy society near you? Do you join any as a member and involve yourself actively in it's programs and activities? If there isn't any epilepsy society near you, do you bother to sign up and register yourself as a member of one or more epilepsy societies on the internet? If you have not done any of these, do it now. Why wait? It is all for your own benefits that you become part of one. After all, epilepsy is about breaking free from shadows, fears, barriers and darknesses.











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Solving the mystery of bone loss from drug for epilepsy and bipolar disorder

Scientists are reporting a possible explanation for the bone loss that may occur following long-term use of a medicine widely used to treat epilepsy, bipolar disorder, and other conditions. The drug, valproate, appears to reduce the formation of two key proteins important for bone strength, they said. Their study, which offers a solution to a long-standing mystery, appears in ACS' monthly Journal of Proteome Research.

Glenn Morris and colleagues point out that use of valproate, first introduced more than 40 years ago for the prevention of seizures in patients with epilepsy, has expanded. Valproate now is prescribed for mood disorders, migraine headache, and spinal muscular atrophy (SMA), a rare genetic disease that causes loss of muscle control and movement. Many SMA patients develop weak bones as a result of the disease itself, making further bone loss from valproate especially undesirable. Doctors have known about the bone-loss side effect, but until now, there has been no molecular explanation.

In an effort to determine why bone loss occurs, the scientists profiled valproate's effects on more than 1,000 proteins in the cells of patients with SMA. They found that valproate reduced production of collagen, the key protein that gives bone its strength, by almost 60 percent. The drug also reduced levels of osteonectin, which binds calcium and helps maintain bone mass, by 28 percent. "The results suggest a possible molecular mechanism for bone loss following long-term exposure to valproate," the article notes.

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6-year-old with Epilepsy wants to help others like her

By Kristin Bien (kbien@wsbt.com)

Lyla Pratt serves up another glass of her lemonade to a garage sale customer. All benefits go to the Epilepsy Foundation. (WSBT photo)

NEW CARLISLE — Thousands of shoppers are heading to New Carlisle this weekend for Hometown Days, and there's a sale that's hard to pass up. It's a six-year-old entrepreneur with an old fashion lemonade stand. Lyla Pratt came up with the idea all on her own, and every penny she earns this weekend is going to a special cause — the Epilepsy Foundation.

"She has Idiopathic epilepsy which means they cannot find a cause for it, says Katie Brasseur. Katie Brasseur, Lyla's mom, says she was a normal baby until she was three. That was when she had her first seizure. You would never know by looking at her, but Lyla has some major health issues. So she is more susceptible to getting sicknesses, illnesses, bacteria in her system, she is frequently sick more. Which leads to her febrile seizures which causes problems with her development," says Brasseur.

That is why all the money earned at the garage sale this weekend will go toward treatment which in many cases is not covered by insurance. Lyla is doing her part too. She has set up a lemonade and cookie stand in the front yard. All the money she makes this weekend, will go toward the Epilepsy Foundation.

"She knows she has seizures and she asks will her brain get better sometimes. That is why she is doing the lemonade and cookie stand. She wants to donate to the Epilepsy Foundation she said, she says she wants to donate for kids with brains like hers," says Brasseur. Lyla has overcome a lot in her six years. But she has a long way to go.

"Epilepsy is dangerous and it can be deadly. In 2008 she was in postictal mode for about 24 hours. That is when she had a relearn how to potty train everything," says Brasseur. But her mom is not giving up. And neither will Lyla.

The garage sale and snack stand will continue through Sunday 8 a.m. until 6 p.m. Central Time









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EPILEPSY AND PREGNANCY

A Litany of Depakote Birth Defects that Are Not Fetal Alcohol Syndrome

July 13, 2010. By Jane Mundy

Seattle, WA: When Cindy was a teenager, she was diagnosed with epilepsy. Her neurologist prescribed Depakote. "I became pregnant and wasn't told to stop taking the medication," she says. "My first child was born with a heart malformation and my second child was recently diagnosed with fetal alcohol syndrome, but I didn't drink when I was pregnant."

Cindy (not her real name) says her daughter was diagnosed with fetal alcohol syndrome because "she has six of the 10 facial characteristics" that define the syndrome. Sonja, another mother who took Depakote while pregnant, was also told that her son had fetal alcohol syndrome—but Sonja doesn't drink at all. Could other doctors mistakenly diagnose Depakote birth defect cases for fetal alcohol syndrome?

There is a litany of adverse events possibly connected with Depakote.

Susan (not her real name) has an eight-month-old son with an underdeveloped right ear. "He has no ear canal and is deaf in that ear and one side of his face is larger than the other," she says. Her son has craniofacial microsomia, a congenital disorder that typically affects the development of the lower half of the face, including the ears. It can lead to breathing difficulties and is the second most common facial birth defect after clefts.

Two other mothers reported that their children were born with cleft palates. "I took Depakote for seizure disorder before and during pregnancy," says Denise. "My baby was born with a soft cleft palate. He needed soft cleft palate repair surgery in 2008 and currently has a delay in speech development."

Kimberly says: "I was being prescribed Depakote for epilepsy and when I became pregnant I was taking 1500mg a day. When I phoned my doctor's office to tell him I was pregnant, he instructed me to continue the drug. A few weeks later I had a miscarriage."

Since Depakote was approved in 1983, the FDA has received six cases of developmental delays, including two siblings reported to have autism. The agency reviewers said it "raises concerns" (6/26/09), but then added, "Further study is needed to further elucidate causality and degree of risk of fetal exposure to (Depakote) and subsequent developmental delay in children."

The drug carries a black box warning alerting users to potential birth defects. Yet a recent study found that "Sodium valproate exposure during pregnancy more than doubles the risk for a major congenital malformation (MCM) in the fetus compared with carbamazepine or lamotrigine," which are also anticonvulsants frequently prescribed for seizures (July 2010: the UK Epilepsy and Pregnancy Register and preliminary results from the European and International Registry of Antiepileptic Drugs in Pregnancy).

The FDA recently sent a letter to neurological and obstetric health workers warning that valproate sodium (marketed as Depacon), valproic acid (marketed as Depakene and Stavzor), divalproex sodium (marketed as Depakote, Depakote CP and Depakote ER) and related products have been shown to increase the risk of cardiovascular malformations, craniofacial defects, neural tube defects and other major birth defects when taken by pregnant women.

Because neural tube defects often develop before a woman even knows she is pregnant, the FDA issued a further warning in December 2009 to "women of childbearing potential." But what about all the women like Cindy who took Depakote before knowing they were pregnant? Those women who were never warned about Depakote and never given the option of taking carbamazepine or lamotrigine?


I was one of these pregnant women who was prescribed a high dose of valproate sodium by my neurologist when I was pregnant. I wonder if it was known or unknown to my neurologist of the potential variable birth defects that could possibly be caused by depakote when he was increasing my depakote intake. He reasoned that it was apt to increase dosage strength to curb chances of seizures happening during pregnancy and since depakote had controlled my seizures well, a need to change my anticonvulsant drug was not deliberated. Thankfully my child was born normal.

Whilst it is important for neurologists to help epileptics lead well controlled seizure free lives by prescribing appropriate AED drugs, it is also pertinent that neurologists make known side effects of drugs to patients. On patients' part, patients must ask neurologists about pros and cons of drugs prescribed, read instructions and labels on packing of drugs and search/read up more information about drugs which can be obtained from medical websites, yahoo and google searches.








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Young And Dynamic Epilepsy Advocate

Amanda is 17 years old. She has epilepsy for the past 5 years and she handles her condition with great courage and determination. She is a fine example of a teenager with epilepsy who does not allow seizures to affect her life in any way. She has a very inspiring blog about her condition and would love everyone to visit her and share their views and comments with her.

( Below is the introduction of her blog )

Dear Readers,

This blog is about my personal struggle and experiences with Epilepsy over the last 5 years. I will be writing to you about what I am feeling each day, and showing how Epilepsy affects my life. I have currently been implanted with a VNS (Vagus Nerve Stimulator). Many people are skeptical and curious about this form of treatment, so I will be blogging with all the facts and side effects that I experience along my way to hopefully being seizure free. I see my Epilepsy as a gift from God, even when it's unbearable. I thank God everyday for blessing me with this disease. God gave me Epilepsy so that I may share it with the world. People need to be informed on what Epilepsy is and how it works. Epilepsy isn't just "a seizure disorder"... it becomes a lifestyle for those affected by it. I hope that you can learn at least one thing from my blog and be able to share it with others. Getting the facts is just one small thing you can to to help Epileptics around the world break the chains of Epilepsy.

(www.mandykrzywonski.blogspot.com)

(Having come to know Amanda and her academic achievements, I had her supportive co operation to write a short article to encourage epileptic students to move on with their studies despite the difficulties they face daily with having epilepsy. Below is her motivating and encouraging write up. Read, be inspired and uplifted - Serene)

"The unfortunate things about epilepsy is that many people let it stop their lives, and often times give up doing the things they love or things that they need to do. Many young students tend to feel as if they are too sick to keep up their studies, especially if epilepsy prevents them from being in school full time. I was and still am one of those students. Your education is the foundation that you will build the rest of your life on it and it is vital to have a strong foundation. Making it through those 4 years of high school or even college can seem impossible when you suffer from seizures.

I personally know a person who actually dropped out of school altogether because they felt their seizures were too much to deal with on top of school. If you look around your community you will find that many schools have programs for hospital bound and ill children living at home. You can have shorter school days or be taught at home with more time to finish your work at your own pace. Some schools are even willing to reduce the amount of work that a student must finish in order to graduate.

I took part in the Northside Independent School District Home Bound Program in San Antonio, Texas and it has benefited me so much. I am also starting to do some classes online at a local college to help myself move forward. Just because it's summer time does not mean that there aren't any ways to move forward in school. It is important to push yourself as far as you can each day because no matter how far away your goals may seem, they are never too far.

I am currently in my last year of high school and I never thought I would make it this far. Thanks to my home bound program I got plenty of rest and I was able to complete my classes in much better health. I encourage all students to use all resources made available for them in their communities because our future depends on what we do now as young students. " Don't Let Epilepsy Rule Your Life! " - Amanda.







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