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Last Updated: Jul 2nd, 2008 - 21:15:22 |
(NAPSI)-A new resource is now available for the approximately 2.5 million adults and children in the United States who have epilepsy, a disorder that causes seizures and is often confusing and frightening to the people who live with the condition and those around them.
Growing up, actress Neve Campbell witnessed first hand the impact epilepsy can have as she watched her cousin Coleen struggle with managing the condition. Ms. Campbell's aunt, Coleen's mother, has also been living with epilepsy for most of her life. That's why Neve and Coleen have joined with other advocates and leaders in the epilepsy community to launch The Bill of Rights for People Living with Epilepsy, a first-of-its-kind national campaign to inform and empower those touched by epilepsy and to increase understanding of epilepsy in the general public. Ms. Campbell and her cousin are working with sponsor Novartis Pharmaceuticals Corporation to launch the program, which is being conducted in conjunction with the Epilepsy Foundation- New York City (EFNYC).
The core of the program is The Bill of Rights, a guide to managing life with epilepsy that was created by the epilepsy community for the epilepsy community. A team of adults with epilepsy, parents of children with epilepsy, epileptologists, neurologists, nurse practitioners and social workers came together with Novartis and the EFNYC to develop the Bill of Rights, which offers information to help people become more involved in managing many aspects of their condition and includes guidance on topics such as rights at school and in the workplace and current information on epilepsy and treatment options.
Epilepsy can affect many different aspects of a person's daily life, which is one of the reasons this kind of information is so important.
"After she was first diagnosed, I watched Coleen struggle to maintain her confidence and her self-esteem," said Campbell. "Although she has been able to manage her epilepsy successfully for many years, getting to that point was difficult and I wish my family had access to more information and better resources about the condition."
Results from a nationwide survey, conducted by Harris Interactive®, highlight the need for more information about managing epilepsy. The survey showed that many people living with epilepsy are unaware of the rights and resources that may be available to them. The survey of 507 adults with epilepsy and 149 parents of children with epilepsy found that almost half of adults and parents (45 percent and 49 percent respectively) do not know or understand the legal rights and protections for people with epilepsy.
"It is important for patients and caregivers to have access to the most up-to-date information to help them address the many challenges associated with epilepsy," said Blanca Vazquez, MD, director of Clinical Trials and Out-Patient Services at New York University Epilepsy Center. "People living with epilepsy must learn all they can about their or their loved one's condition so they can be strong advocates and take an active role in managing their healthcare."
To receive a free copy of the Bill of Rights for People Living with Epilepsy and other information about epilepsy, people can call 1-877-6ERIGHTS or visit www.EpilepsyBillofRights.com.
Actress Neve Campbell, left, has watched her cousin Coleen, right, struggle with epilepsy and knows how difficult it can be.
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