ABOUT MY DISABILITY'S
SO WHY AM I WRITING THIS BLOG ?
To create awareness of how these cuts will / are effecting people, like me, who have a long-term disability. I want to be a voice, for those who cannot speak. I want to be a voice for those who cannot be there in person... and I want to be the voice, to ask "important questions" - and then be able to help, make changes.
WHAT ARE MY DISABILITY'S ?
I have Epilepsy and Aspergers Syndrome.
Epilepsy isn't just one condition, but a combination and composite of about 40 different types of Epilepsy Seizures, and up to 50 different syndromes.
What is Epilepsy ? Here's some facts...
(1.) Myoclonic Epilepsy
The word myoclonic comes from ‘myo’ meaning muscle, and ‘clonus’ meaning jerk. So in a myoclonic seizure your muscles jerk.
Myoclonic seizures can sometimes cause your whole body to jerk. More usually, they only cause jerking in one or both arms and sometimes your head. Although it may not be obvious, during the seizure, you are unconscious for a very brief time.
Even though the seizures are brief, they can be extremely frustrating.
To create awareness of how these cuts will / are effecting people, like me, who have a long-term disability. I want to be a voice, for those who cannot speak. I want to be a voice for those who cannot be there in person... and I want to be the voice, to ask "important questions" - and then be able to help, make changes.
WHAT ARE MY DISABILITY'S ?
I have Epilepsy and Aspergers Syndrome.
Epilepsy isn't just one condition, but a combination and composite of about 40 different types of Epilepsy Seizures, and up to 50 different syndromes.
What is Epilepsy ? Here's some facts...
- Epilepsy is defined as a tendency to have recurrent seizures, when a sudden burst of excess electrical activity in the brain causes a temporary disruption in the normal message-passing between brain cells. This disruption results in the brain’s messages becoming halted or mixed up. The brain is responsible for all the functions of your body, so what you experience during a seizure will depend on where in your brain the epileptic activity begins and how widely and rapidly it spreads. For this reason, there are many different types of seizure and each person will experience epilepsy in a way that is unique to them.
- Epilepsy is not one condition but a composite of about 40 different types of seizures and up to 50 different syndromes.
- Epilepsy affects about 600,000 people in the UK.
- Epilepsy is a recognised Disability. Unlike a physical disability, Epilepsy is a "hidden disability" as you cannot see a person who has it.
- A quarter of people in the UK who are known to learning disability services have epilepsy.
- Half of the 60,000 young people in the UK with epilepsy, are estimated to be underachieving academically relative to their intellectual capacity
- People in the UK with epilepsy, have been shown to be twice as likely as those without epilepsy to be at risk of being unemployed.
- In 2009 about 1,150 people in the UK died of epilepsy-related causes. That means that, each day in the UK, approximately three people with epilepsy die, and at least a third of those deaths—one death each day—are potentially avoidable.
(1.) Myoclonic Epilepsy
The word myoclonic comes from ‘myo’ meaning muscle, and ‘clonus’ meaning jerk. So in a myoclonic seizure your muscles jerk.
Myoclonic seizures can sometimes cause your whole body to jerk. More usually, they only cause jerking in one or both arms and sometimes your head. Although it may not be obvious, during the seizure, you are unconscious for a very brief time.
Even though the seizures are brief, they can be extremely frustrating.
(2.) Absence Seizure
During an absence seizure, you are unconscious for a few seconds. You appear to be "daydreaming" or seemed "switched off". You don’t know what is happening around you, and you can’t be brought out of it.
Because anybody can daydream at any time, absences can be very hard to spot. It’s possible to have hundreds of absence seizures a day, preventing you from fully taking part in daily activities. You could also miss out on tiny pieces of information or events. This may be mistaken for lack of attention or concentration.
WHAT MEDICATION DO I TAKE FOR MY EPILEPSY ?
I take "LEVETIRACETAM" also known as KEPPRA. My dosage history is:
DID YOU KNOW THIS FACT...?
WHAT EFFECTS DOES EPILEPSY HAVE ON MY LIFESPAN ?
Patients with epilepsy are at increased risk of sudden death. This is known as SUDEP (Sudden Unexplained Death in Epilepsy).
The cause of SUDEP is not known but the risk of sudden death is several times higher in patients with epilepsy than the general population. In general, the risk of SUDEP is thought to correlate with the severity of the epilepsy as well as with patient noncompliance.
The primary event is felt to be neurological with a secondary effect on the electrical system of the heart but the exact mechanism is unclear.
For this reason, epilepsy treatment becomes of paramount importance.
During an absence seizure, you are unconscious for a few seconds. You appear to be "daydreaming" or seemed "switched off". You don’t know what is happening around you, and you can’t be brought out of it.
Because anybody can daydream at any time, absences can be very hard to spot. It’s possible to have hundreds of absence seizures a day, preventing you from fully taking part in daily activities. You could also miss out on tiny pieces of information or events. This may be mistaken for lack of attention or concentration.
WHAT MEDICATION DO I TAKE FOR MY EPILEPSY ?
I take "LEVETIRACETAM" also known as KEPPRA. My dosage history is:
- February 2011 - start taking 250mg twice a day
- June 2011 - start taking 500mg twice a day
- August 2011 - start taking 750mg twice a day
Monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and for adjunctive therapy of myoclonic seizures in patients with juvenile myoclonic epilepsy and primary generalised tonic-clonic seizures.
|
DID YOU KNOW THIS FACT...?
WHAT EFFECTS DOES EPILEPSY HAVE ON MY LIFESPAN ?
Patients with epilepsy are at increased risk of sudden death. This is known as SUDEP (Sudden Unexplained Death in Epilepsy).
The cause of SUDEP is not known but the risk of sudden death is several times higher in patients with epilepsy than the general population. In general, the risk of SUDEP is thought to correlate with the severity of the epilepsy as well as with patient noncompliance.
The primary event is felt to be neurological with a secondary effect on the electrical system of the heart but the exact mechanism is unclear.
For this reason, epilepsy treatment becomes of paramount importance.
Comments
Post a Comment