The young designer María Prats has wanted to change the way of seeing the world of epilepsy with a project full of colors with which she wants to demonstrate that “a disability is not an obstacle to achieving dreams”
María Prats is a cheerful and optimistic girl who likes peace and tranquility, virtues that she has reflected in her project ‘Colours. Creativity & Design’.
This young woman is 21 years old and lives in Barcelona. She spent her childhood in the San Joan de Déu hospital after suffering a complicated birth that caused her trauma.
Mary currently lives with refractory epilepsy, a disease of the nervous system that produces brain alterations and that makes it difficult to control through pharmacological treatment.
This problem leads the young woman to live a complicated daily life. Her illness forces her to sleep a minimum of 10 hours a day to be able to face the day to day with energy and, above all, to prevent possible crises.
Within the framework of International Epilepsy Day, EFEsalud spoke with María and her mother, Chus, and also with her doctor and neurologist, María del Mar Carreño. The colors of life
María knew from a very young age that her passion was to paint and create. She has always “expressed herself through colors,” her mother tells us, which is why “we decided to professionalize this profession so that it would become her life project.”
“He wants to fill the world with colors. For Maria colors are synonymous with joy and happiness. Her goal is to be able to pass on this happiness to everyone through her designs »,
Chus account.
The young designer has never doubted her abilities, which is why his work is not directed to the approval of his public, but to his own satisfaction to elaborate what for her is “sharing the magic of colors”.
“A disability is not an obstacle to achieving our dreams and being successful. I paint to express my joy of living, sharing the magic of colors is my gift to the world. I can’t change the world, but I can change the way of seeing it.”
Maria shares.
“It is not a mental problem”
The Dr. Mª del Mar Carreño, president of the Spanish Epilepsy Societydescribes Maria as a “compliant, tenacious and very good-natured patient, with her family and with the health personnel”.
He believes that his project “is a benefit for María because it helps her work on attention, creativity and organize her time”.
“The project is very good for the entire community of patients with epilepsy, it gives visibility to the disease and helps reduce stigma”,
says the expert.
The stigma that this disease suffers in society is due to the little knowledge that is had of it, reaching confused with a mental problem.
“I think they don’t understand it and they misunderstand it. Crises are scary and frightening because there is little information, few people know how to act before a person who suffers a seizure, “
tells the young Maria.
Her doctor agrees and reflects that part of this stigma is also due to the fear of the disease, “a problem that limits the patient’s social and work life.”
«To integrate socially we recommend participating in all kinds of activities that encourage contact with other people and where activities that interest them are carried out as long as they do not pose a potential risk. For example, risky sports are contraindicated, but most team sports can be practiced.”
advises the expert in epilepsy.
More inclusion, empathy and self-esteem
María has given us the keys so that her quality of life, as well as that of all patients, can be better.
In inclusion, empathy and self-esteem is the key. Well asks that “they be valued for what they can do and not be treated differently”.
“I always say that I don’t have a disability, I’m lucky to have other abilities and believe in them,”
says the young woman.
“My dream is to be able to create an inclusive space where other young people with other abilities can express themselves and share projects. Together we can do great things and show the world how great we are.”
life with epilepsy
The drug resistance that Maria suffers from in her illness limits much of her daily activity.
Her crises prevent her from being alone since “they need rescue, that’s why there is always someone looking out for me.”
“The worst thing about crises is that they are unpredictable, you never know when or where you might have one,”
says the young designer.
In the case of this young woman’s epilepsy, the treatment includes a combination of drugs that allow her seizures to be controlled.
However, the refractory nature of his epilepsy leads him “often to change some drug to maintain stability.”
“Over time, the body gets used to it and some medications lose their effectiveness, so you have to change your medication, try a new combination and hope it works. This always generates fear and anguish”,
Mary describes.
Therapeutic adherence is essential to control epileptic seizures, as well as “avoiding those factors that can worsen them, such as lack of sleep, excessive stress, or alcohol and drug use“, advises the neurologist.
The evolution of pharmacology in epilepsy has made it possible to reduce serious side effects in the short and long term and to complement other existing medicines.
In fact, “for patients in whom medicines do not work, there are alternatives such as surgery, certain diets or brain stimulation with devices.”
In uncontrollable cases…
There are many types of epilepsy. When the disease is controlled, the chances of having an education and working and social life is comparable to people who do not have epilepsy.
In the case of uncontrolled crises, which continue despite the correct medication or in addition to epilepsy they suffer from an intellectual disability, the “special needs are not always covered”.
“In general, you have access to special education, but the situation is quite complicated to get a job. I believe that more resources should be developed in this field, such as having more places in companies for people with disabilities and more occupational centers”,
claims the expert in neurology.
It could be epilepsy and you don’t know it
This disease, like others, can be misdiagnosed. Epilepsy can be confused with “vasovagal or cardiac syncope and with psychogenic crises,” explains Dr. Carreño.
“There are many diseases that can give similar symptoms, such as migraine, metabolic disorders or transient vascular accidents,”
Add.
