Purple Day… Awareness…

purple day

It’s purple day again… March 26th… Epilepsy Awareness…

 

A day to reflect… a day to look forward in hope… a day to help raise awareness of such a misunderstood condition…

 

You can’t swallow your tongue during a seizure. It’s physically impossible.

You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone’s jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.

DON’T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first-aid guidelines.

Epilepsy is NOT contagious. You simply can’t catch epilepsy from another person.

Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.

Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.

People with epilepsy CAN handle jobs with responsibility and stress. People with seizure disorders are found in all walks of life. They may work in business, government, the arts and all sorts of professions. If stress bothers their seizures, they may need to learn ways to manage stress at work. But everyone needs to learn how to cope with stress! There may be some types of jobs that people with epilepsy can’t do because of possible safety problems. Otherwise, having epilepsy should not affect the type of job or responsibility that a person has.

Even with today’s medication, epilepsy CANNOT be cured.

Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn’t work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure.

Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s, and traumatic brain injury.

You CAN die from epilepsy. While death in epilepsy doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.

What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

<http://www.epilepsy.com/learn/epilepsy-101/facts-about-seizures-and-epilepsy&gt;

 

Four years have passed since we have joined the not so exclusive club.  Four years realizing that there are still so many ways that misinformation exists… so many ways that more glamorous conditions are funded and information is given out.  Four years since Adam found my little girl laying on the floor at the bottom of the stairs (thank goodness she was sitting three steps up) in a tonic clonic seizure.  We have come a long way in four years… but we really haven’t.  I look at my babies with pride but I know that it is a specter that will shadow them forever.

 

Holding the proclamation

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Round Rock Texas Proclaims it Purple Day

Tonight at the council meeting, Round Rock Texas proclaimed that For all of Round Rock Texas tomorrow is Purple Day.

We got our picture taken with the city seal and the proclamation.

International Purple Day!

Okay everyone!  It is fast coming up on International Purple Day.  This is the day that, around the world, we are trying to raise awareness of epilepsy.

From the official Purple Day website

Purple Beginnings

Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea which is now known as the Purple Day for epilepsy campaign.

As of about 30 min ago, I became a local Ambassador of Purple!

Am I totally weird?  Probably…

Do I really want to take this on… I don’t really want to have to… but I really want to do this for squirrel and for everyone who has to wake up scared from a seizure… and for every parent or loved on who has seen a seizure in process… and for everyone who has not yet seen one but who might be faced with seeing a seizure.

I guess I never really realized that people who I think ought to know what to do, how to deal with a seizure really don’t know.  Do you know that your school’s faculty may not have ever learned what to do in the event of a seizure event?  There are at least 8 kids in my son’s class (if statistics are even CLOSE) who have epilepsy.  There are 8 in my daughter’s class… 16 in half the school… 32 kids in the whole school?  Really?  an ENTIRE classroom full of kids every year and the teachers are asking me what to do in the case of a seizure?  Dang…

It is scary…

I think that was when I decided I needed to do something to help.  So no one has to whisper that they have epilepsy.  Son no one laughs when they see someone in the middle of a seizure, or thinks that if they try to help comfort someone as they are seizing or as they are coming out of an event that they will catch something.  They aren’t having a fit.  They aren’t crazy or possessed or going to swallow their tongue.

This is my way of reaching out and making sure that for my kid and for every kid (and adult for that matter) can know that no-one is going to judge or fear.  Yes, it can be very scary, but if you have epilepsy…  epilepsy doesn’t define you.  It is a part of you, it is a part that makes you who you are but it can’t be allowed to consume who you are.