Learn More
aBOUT US
Good Day everyone and thankyou so much for checking in!
Epifocus is a Non-Profit Brand Campaign that we will launch on 3 June 2023 to show our support for Epilepsy.
Throughout this website we will bring awareness by sharing stories about those living with Epilepsy and how it impacts their lives as well as their families.
We will share valuable links to different sites such as the Epilepsy Foundation, sites for those in need of service dogs etc, and most importantly the site where you can get Seizure First Aid on Demand.
We also added all our social media links for your convenience.
Learn More
Raising Awareness
Key facts:
- Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages.
- Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
- Nearly 80% of people with epilepsy live in low- and middle-income countries.
- It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
- The risk of premature death in people with epilepsy is up to three times higher than for the general population.
- Three quarters of people with epilepsy living in low-income countries do not get the treatment they need.
- In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.
So lets take these point and look into it:
Overview:
Epilepsy is a chronic noncommunicable disease of the brain that affects around 50 million people worldwide. It is characterized by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalized) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
Seizure episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day.
One seizure does not signify epilepsy (up to 10% of people worldwide have one seizure during their lifetime). Epilepsy is defined as having two or more unprovoked seizures. Epilepsy is one of the world’s oldest recognized conditions, with written records dating back to 4000 BCE. Fear, misunderstanding, discrimination and social stigma have surrounded epilepsy for centuries. This stigma continues in many countries today and can impact on the quality of life for people with the disease and their families.
Signs and symptoms
Characteristics of seizures vary and depend on where in the brain the disturbance first starts, and how far it spreads. Temporary symptoms occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing and taste), mood, or other cognitive functions.
People with epilepsy tend to have more physical problems (such as fractures and bruising from injuries related to seizures), as well as higher rates of psychological conditions, including anxiety and depression. Similarly, the risk of premature death in people with epilepsy is up to three times higher than in the general population, with the highest rates of premature mortality found in low- and middle-income countries and in rural areas.
A great proportion of the causes of death related to epilepsy, especially in low- and middle-income countries, are potentially preventable, such as falls, drowning, burns and prolonged seizures.
Causes
Epilepsy is not contagious. Although many underlying disease mechanisms can lead to epilepsy, the cause of the disease is still unknown in about 50% of cases globally. The causes of epilepsy are divided into the following categories: structural
genetic
infectious
metabolic
immune and unknown
Examples include:
- brain damage from prenatal or perinatal causes (e.g. a loss of oxygen or trauma during birth, low birth weight);
- congenital abnormalities or genetic conditions with associated brain malformations;
- a severe head injury;
- a stroke that restricts the amount of oxygen to the brain;
- an infection of the brain such as meningitis, encephalitis or neurocysticercosis,
- certain genetic syndromes; and
- a brain tumor.
Treatment
Seizures can be controlled. Up to 70% of people living with epilepsy could become seizure free with appropriate use of anti-seizure medicines. Discontinuing anti-seizure medicine can be considered after 2 years without seizures and should take into account relevant clinical, social and personal factors. A documented etiology of the seizure and an abnormal electroencephalography (EEG) pattern are the two most consistent predictors of seizure recurrence.
In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the “treatment gap”.
In many low- and middle-income countries, there is low availability of anti-seizure medicines. A recent study found the average availability of generic anti-seizure medicines in the public sector of low- and middle-income countries to be less than 50%. This may act as a barrier to accessing treatment.
It is possible to diagnose and treat most people with epilepsy at the primary health-care level without the use of sophisticated equipment.
Surgery might be beneficial to patients who respond poorly to drug treatments.
Prevention
An estimated 25% of epilepsy cases are potentially preventable.
- Preventing head injury, for example by reducing falls, traffic accidents and sports injuries, is the most effective way to prevent post-traumatic epilepsy.
- Adequate perinatal care can reduce new cases of epilepsy caused by birth injury.
- The use of drugs and other methods to lower the body temperature of a feverish child can reduce the chance of febrile seizures.
- The prevention of epilepsy associated with stroke is focused on cardiovascular risk factor reduction, e.g. measures to prevent or control high blood pressure, diabetes and obesity, and the avoidance of tobacco and excessive alcohol use.
- Central nervous system infections are common causes of epilepsy in tropical areas, where many low- and middle-income countries are concentrated. Elimination of parasites in these environments and education on how to avoid infections can be effective ways to reduce epilepsy worldwide, for example those cases due to neurocysticercosis.
Social and economic impacts
Epilepsy accounts for more than 0.5% of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in less than full health. Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity.
Out-of-pocket costs and productivity losses can create substantial burdens on households. An economic study from India estimated that public financing for both first- and second-line therapy and other medical costs alleviates the financial burden from epilepsy and is cost-effective.
The stigma and discrimination that surround epilepsy worldwide are often more difficult to overcome than the seizures themselves. People living with epilepsy and their families can be targets of prejudice. Pervasive myths that epilepsy is incurable, or contagious, or a result of morally bad behavior can keep people isolated and discourage them from seeking treatment.
Human rights
People with epilepsy can experience reduced access to educational opportunities, a withholding of the opportunity to obtain a driving license, barriers to enter particular occupations, and reduced access to health and life insurance. In many countries legislation reflects centuries of misunderstanding about epilepsy, for example, laws which permit the annulment of a marriage on the grounds of epilepsy and laws that deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
Legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to health-care services, and raise the quality of life for people with epilepsy.
HOW PEOPLE LIVING WITH EPILEPSY ARE AFFECTED
Abstract
The impact of epilepsy is multifaceted and extensive on its effects. The occurrence of seizures is unpredictable and often dangerous, increasing the risk of injury, hospitalization and mortality, and adversely affecting a patient's mental health, often resulting in anxiety, depression or cognitive impairment. Seizures can also result in stigmatization and social exclusion, with detrimental effects on an individual's confidence and self-esteem. However, the burden of epilepsy extends beyond the effects of seizures themselves. In particular, individuals with epilepsy are significantly more likely to have medical or psychiatric comorbidities than those without epilepsy, and comorbidity in patients with epilepsy has been shown to be strongly correlated with negative impacts on subjective health status and quality of life (QoL). In addition, antiepileptic drug (AED) treatment is commonly associated with side effects, which further impair patients' QoL. Patient surveys provide valuable insights into what matters to patients in their daily lives and highlight important discrepancies between the perceptions of patients and their physicians. For example, survey data show that physicians underestimate the number of patients experiencing AED side effects and the impact of these on patients. Screening questionnaires can help physicians to quickly identify problems with treatment side effects; also, to recognize comorbidities such as depression that are otherwise difficult to identify in a time-limited consultation. Ultimately, successful management of epilepsy requires a holistic approach to care, with treatment tailored to the individual patient's needs; this can only be achieved through effective doctor-patient communication and the full involvement of a multidisciplinary care team.
Further more as we will keep updating our website you will see / hear personal stories of Epilepsy patients.
how families, COMMUNITIES AND SOCIETY are affected
The effect of epilepsy extends beyond those with the diagnosis and impacts families, communities and society. Caregiver and sibling quality of life is often negatively affected by frequent seizures, comorbid behavioral and sleep disorders and stigma surrounding the diagnosis. Furthermore, the negative effects can be magnified by individual coping styles and resources available to families of those with epilepsy. Beyond the family and immediate caregivers, epilepsy affects local communities by drawing additional resources from education systems. The direct costs of caring for an individual with epilepsy and the indirect costs associated with decreased productivity place financial strain on individuals and health care systems throughout the world. This review details factors affecting family and caregiver quality of life and provides several approaches through which health care providers may address these concerns. Furthermore, we examine the financial effect of epilepsy on society and review emerging strategies to lessen health care use for individuals with epilepsy.
Epilepsy's impact extends beyond those affected by seizures to other members of the family. It is common for parents and siblings of a child with epilepsy to experience anxiety, feelings of helplessness, or guilt in response to the child's seizures and seizure risk. Recognizing these emotions and finding positive ways to respond to the stresses that epilepsy may present can help family members create an atmosphere of hope and empowerment that can benefit everyone.
Seizures have the potential to interrupt normal routines by affecting a child's behavior or consciousness. This, in turn, can impact a family's daily activities. However, as unsettling as a seizure itself may be, the inability in many cases to predict when, or if, another seizure will occur may have an even more profound impact on daily family life.
Being unable to predict the path that a child's epilepsy will take inevitably causes worry among all members of the family. Although the concerns may vary among family members, anxieties, fears, and even resentment can affect each family member's self-image as well as how they interact with and feel about each other.
For example, parents may respond to their child's epilepsy by being overprotective or overindulgent; the child with epilepsy may withdraw from friends or social activities for fear of being embarrassed in the event of a seizure; and siblings may try too hard to please their parents or be too willing to allow their needs to go unmet, or may have feelings of resentment toward the sibling with epilepsy, who is getting more parental attention.
Although such powerful emotions are a natural response to epilepsy, a constructive approach can dramatically improve the quality of life for the entire family. For instance, by focusing on what the child can do, rather than what he or she cannot do—parents help the child, and his or her siblings, to view life with a positive attitude. Indeed, one of the best indicators of epilepsy's impact on a child and his or her family is how family members—especially parents—react to the child's diagnosis and seizures. As with many aspects of life, children with epilepsy often view their disorder through the eyes of their parents.
Being "normal" and leading a normal life is extremely important to most children. And although this notion is inherently subjective, many children with epilepsy are convinced that no one understands how it feels to have a seizure or worry about having one. For a family with a child with epilepsy, both that child and his or her siblings may feel that things are not "normal."
Children with epilepsy, like all children, require opportunities to be independent, to risk, to maintain friendships, and to experience life as normally and as fully as possible. They also require discipline and must learn early in life the reality that everyone has problems and issues that must be dealt with and that no one has everything that he or she desires. It may also be important for children with epilepsy to know that feeling "different" is something many children experience, whether they have epilepsy or not.
Sharing Warrior stories
SHOWING YOUR SUPPORT
The following Forms are available on our Whataspp link:
Sponsorship
Donor
Volunteer
CONTACT US
0671261773
epifocus23@gmail.com
Port Elizabeth, Eastern Cape, South Africa