From our partner Irene Tarragó
24th MAY: EPILEPSY’S NATIONAL DAY
This year I have a very busy month:
- Numerous medical checkups
- Work with our Cree party
- Preparing for my husband’s birthday celebration. He turned 70 on December 30th, but since it’s a very bad date to celebrate, we decided to move it to May 31st
- Activities, writing collaborations, and articles for National Epilepsy Day.
What I want to demonstrate with this series of activities is that a person with epilepsy can be committed, live a life like anyone else, be an activist for people with epilepsy, celebrate life…
Epilepsy is a neurological disease characterized by the brain’s predisposition to generate epileptic seizures. The Spanish Society of Neurology (SEN) estimates that around 400,000 people suffer from epilepsy in Spain and that between 12,400 and 22,000 new cases are detected each year. In Europe, it affects approximately 6 million people, and approximately 400,000 new cases are reported each year.
Seventy percent of people with epilepsy can live with the disease controlled with medication if it is diagnosed and managed appropriately. Early diagnosis is very important to find the most appropriate medication for each patient.
Between 20 and 30% have refractory epilepsy, resistant to drugs, and some of them are inoperable.
I will always be willing to show my face, to tell my story, to present myself as privileged to have the positive side of this disease, which, as I have said many times, has also been kept at bay because I have followed the basic rules: take my medication, sleep eight hours, and don’t drink alcohol.
But epilepsy is a very little-known and still very feared disease. This means that people with epilepsy live under the stigma of something that is not understood and, therefore, feared.
For this reason, and although people with epilepsy and their families live with this disease every day of the year, these days are so necessary for us to talk more about it, to spread the word about what to do in the event of an epileptic seizure, to insist on the need for research, and on the need for families with members with refractory epilepsy to receive help. Let’s light up our cities orange to make epilepsy visible!
I will always be willing to show my face, to tell my story, to present myself as privileged to have the positive side of this disease, which, as I have said many times, has also been kept at bay because I have followed the basic rules: take my medication, sleep eight hours, and don’t drink alcohol. I know people who haven’t done this and haven’t had as good control of the disease as I have. In other words, being disciplined helps a lot.
You could say I’ve lived with epilepsy all my life: diagnosed at 17, now I’m 66. And here I am, still fighting.
Because it’s today, I’d like to remind you of the basic rules for caring for a person experiencing an epileptic seizure:
- Stay calm.
- Help position the person on the floor, avoiding injury.
- Place a pillow or folded blanket under the person’s head so it doesn’t hit the floor.
- Remove the person’s glasses and loosen the belt, tie, and tight clothing.
- Remove sharp or pointed objects that could cause injury, and heat sources that could burn the person.
- Do not insert objects into the person’s mouth or attempt to administer oral medications.
- Do not restrain the person tightly to prevent movement.
- After the seizure, let the person rest lying on their side. This way, any vomiting, saliva, or phlegm won’t pass into the person’s lungs.
- Measure the duration of the seizure. If it lasts more than 3 minutes, call emergency services. (Just in case, always call).
Irene Tarragó Pascau
