We settled into the new year quickly with a busy schedule and many goals to achieve.  We have only two months until we reach the end of our financial year (end March), and before we start implementing our 2009/2010 business plans which we are very exited about.

As a non profit organisation we are definitely feeling the pinch of the uncertain economic climate. I would therefore want to thank all our partners, donors and funders for their continued support and want to assure you that your donations and support are effectively utilized to achieve the set objectives and goals as agreed with each of you.

We plan to put increased emphasis on advocacy during 2009/2010 but the unique aspect of this is that we aim to have it done by people with epilepsy. For this reason I want to request that any person with epilepsy who are willing to join our organisation and give of your time to advocate on the rights of all people with epilepsy, to please contact us.

As stated in my previous letter, the National Directors and National Board meetings will take place during March 2009 and we will provide you with detailed feedback about discussions and decisions after these meetings.

Other exciting news:
Name Change: The Mick Leary Educational Trust, a Trust which provides study bursaries to students with epilepsy in South Africa, has officially been renamed and registered as the Epilepsy South Africa Educational Trust. The Trustees held their allocations meeting on 4 February and we are happy to announce that eight students will receive financial support towards their studies this year. The Trust will also celebrate its 10th anniversary during 2009 and we will inform you of the date of our celebration at a later stage. This promises to be a function to look forward to!

In closing I hope that you have a wonderful month of Love, seeing that it is Valentines day this month and that you will overcome those obstacles that hinders us from enjoying the things that really and truely matter.

Noeline de Goede

www.blankbottle.co.za
 

The National Office built up an extensive library related to epilepsy and we would like to invite you to request some of the interesting information from us. Simply mail us at info@epilepsy.org.za. We have numerous articles, studies and documentary publications to send you.

Our online counselor is in contact with people regarding their unique need for information and assistance, on a daily basis.  We will continue to present this option to friends out there but thought it necesary to share the information below to spread the knowledge and make champions for epilepsy.
 

THE IMPACT OF EPILEPSY ON EMOTIONAL, SOCIAL AND PHYSICAL DEVELOPMENT

When a child is diagnosed with epilepsy, it is mostly experienced as very traumatic and overwhelming by the parents, mainly due to their lack of knowledge about epilepsy and the believed myths and stigma attached to epilepsy. Depending on how the parents and other meaningful family members deal and cope with the diagnosis, it will effect the future emotional and social development of the child. Many parents tend to become depressed, angry, anxious, and literally goes through a grieving process. It is very important to allow parents to go through this grieving process in order to reach a phase of acceptance, when they can then start adapting to this diagnosis.

Some parents and family members however struggle to reach acceptance which can have a negative impact on the child’s emotional development. The child could feel that s/he is responsible for their parent’s distress. Depending on the parent’s emotional reaction the child could also adopt a very negative outlook on his / her life, which could lead to depression, isolation and lack of self-esteem. The child could feel condemned for life having to live with epilepsy and may discard all the dreams and aspiration they had, which will have a serious negative impact on the child’s future emotional and psychological development.

On the other hand, if the family and parents of a child accept the diagnosis of epilepsy and adapt their lives accordingly, but remain to live their lives as similarly as possible to what is was before the diagnosis, as well as provide the necessary support to the child and continue to motivate the child, the child is most likely to continue to develop positively despite the diagnosis of epilepsy.

Parents must guard against overprotecting their child with epilepsy, and should allow their child to continue to participate in outdoor activities, sport and to socialize with friends. The necessary precautions must be taken for certain activities, such as swimming, cycling, etc. but one must remember that a child with epilepsy can do anything that any other child can do as long as it is done responsibly. If parents overprotect their child it often leads to lack of self-esteem in the child, the child becoming isolated and even being teased by friends because s/he is never allowed to participate in activities.

It is also advisable that the parents inform the child’s school, teacher and friends about epilepsy, as to prevent any stigmatization or misconceptions about having epilepsy. Everybody should also be informed about what to do and what should not be done in the event of a seizure.

Attention must also be given to the siblings of the child that has been diagnosed with epilepsy. Often due to the additional attention the parents must give to the child that has been diagnosed with epilepsy, the other siblings might feel left out or neglected. It is only natural that the parents now have an additional situation to deal with, which previously was not part of the family life, and that can take a lot of time, especially during the early phases after the diagnosis. Parents must give careful consideration to their other children as well, include them in discussions about epilepsy and explain to them that they are still being loved, despite that fact that additional attention must be given for a while to this new situation. The siblings might also fear the actual seizures of their brother or sister and may be traumatized by witnessing seizures. Siblings can even fear that their brother or sister might die and might fear to be left alone with their brother or sister, in case a seizure might take place. These fears and reactions are normal and parents should address it directly and if necessary with the support of a counselor. Ensure that you and your whole family receive adequate information about epilepsy, as well as counseling, which can prevent any long term emotional or psychological problems.

Epilepsy does not effect the physical/neurological development of a child except for certain severe childhood epilepsy syndromes, where seizure activity is so severe that it does have a negative impact on development. Certain anti-convulsant medications could also have negative implications / side effects for some people, such as increased memory loss, which definitely impacts on the functioning and development of the person with epilepsy.

The most important thing to remember is that every person’s seizure activity is different from another person, that every person experience living with epilepsy differently from another person and that one should never generalize when talking about epilepsy.

It must be noted that due to epilepsy’s unpredictable nature (one never knows exactly when the next seizure will take place or how severe the seizure will be) people with epilepsy have to learn to cope with this unpredictability which is a huge emotional strain. Some people find it very difficult and spend a lot of time worrying about having a possible seizure, where other people make a decision to continue with life and to just deal with having the seizure when it happens. Many people feel angry and frustrated about having epilepsy, which can often be seen in their behavior, as they might start behaving recklessly, defiant or aggressive.

In most cases, people with epilepsy can and should develop normally and should develop to reach their fullest potential. With the necessary knowledge about epilepsy, support and acceptance this is possible.
 

The wonderful food, wine ambiance and decor will have to compete with the previous year's. This is not an easy task but with so much up their sleaves, they are humming with excitement and should be ready with information next week - as a Valentines gift to our supporters.

Should you be interested please send a request to funddev.no@epilepsy.org.za. You will be updated once the venue and material has been authorised but for know you need to book 21 May in pen as a date with Epilepsy South Africa.