I took some time today to read the “State of Research in The Epilepsies 2013″ report published on the C.U.R.E Epilepsy website www.CUREepilepsy.org In the letter from the Chair, Susan Axelrod, I read three important facts , which were further discussed in the report, that I think often get overlooked or blindly accepted by parents who are living with a child with Epilepsy.
Firstly, Ms. Axelrod points out that there continues to be inadequate per patient funding. I discovered, while reading this report, that there are 65 million people world-wide suffering with Epilepsy. And in the United States one in 26 people will develop epilepsy in their lifetime. To me, those are staggering numbers, and numbers which I had no perception about until my family became part of the statistic. Funding for epilepsy research has grown only 5% since 2008, compared with funding for Autism and Alzheimer`s which have grown by 44% and 28% respectively. It is clear that Epilepsy continues to remain a rather mysterious and silent disease for mainstream media; unless we can begin to advocate more for our children and adults who suffer with this disease, little will be done to increase the funding so badly needed.
Secondly, Ms, Axelrod points out that research is primarily focused on symptom control rather than cures. I personally feel that this observation plays a direct impact on the point above. Since, for the most part, there are drug therapies that help control seizure activity, there is less anxiety and demand for research to find a cure; it`s almost like there is an attitude that because there are adequate drug therapies to control seizures, there is no need for finding a cure. As parents who were new to this disease, we often felt that the doctors were more concerned with simply masking the seizures with medication than finding the cause or the cure.
While I understand that finding the cause and/or cure are pretty lofty, expensive and time-consuming activities, it would have been nice if we didn’t have to scour the internet to learn that these things were happening behind the scenes. I am here to tell you, as a parent who might be looking for answers, that yes, in fact there is lots being done behind the scenes, but help and funding is needed so that more can be done.
The last, and perhaps scariest point Ms. Axelrod made is that “Children with uncontrollable seizures frequently face a lifetime of intellectual and developmental disability”. This point, brought to attention in the opening letter of this important report, is the scary reality that many parents live with day-in-and-day-out when they have a child with Epilepsy. As a parent, you are well aware that delays in intellect and development also lead to delays in becoming fully adept at being able to exist at appropriate social levels for their age.
I want to urge every single parent who has a school-aged child with epilepsy, whether controlled or not, to do what you can do to obtain a Neuropsychological Assessment for your child. The doctor performing the assessment may also recommend a Psycho-Ed. Many times, if you have private health-coverage these tests can be partially or fully covered. There are far-reaching implications on your child’s development and learning each time their little growing brain experiences seizure activity. For our daughter, we discovered that she had very poor working-memory which is why she was having such a hard time learning basic sight-words and was unable to read at grade-level.
We also discovered that she had inadequate impulse control which was impacting her ability to properly relate and socialize with kids her age. Without this information helping guide us, we would have never been able to fully help treat her non-seizure symptoms of Epilepsy. As a result of these findings (as well as many others that were uncovered in the report prepared for us), we have been able to ensure she gets adequate in-class support, an Orten-Gillingham Tutor to help with her reading and comprehension and added emphasis and discussions when it comes to difficulties she encounters with her friends at school. While we don’t allow her to use her epilepsy as a reason for bad behavior or poor academic results, we now understand that she requires support in different ways than her older brother who doesn’t have epilepsy.
I discovered, while reading this report, that there are 65 million people world-wide suffering with Epilepsy. And in the United States one in 26 people will develop epilepsy in their lifetime. To me, those are staggering numbers, and numbers which I had no perception about until my family became part of the statistic. I hope that maybe, just maybe, if you are reading this post, you will take a look at the detailed report yourself and find a way to help support the millions of people that suffer, often in silence, with this disease.
Please note: all information in this blog post was taken from the www.CUREepilepsy.org web-site. Opinions expressed are mine and were not discussed with CUREepilepsy