To Raise Epilepsy Awareness
Circle of Life and Love for Epilepsy has sponsored or staffed Information tables at many events which have included:
Afternoon Teas
Seminar Lunches at Local Restaurants
Vendor Parties
Walk-A-Thons
Bowl-A-Thons
Old Settler's Craft Fair
Circle of Love and Life for Epilepsy offered Jerrica's Jewels for Epilepsy at Old Settlers Days on Sept 8 & 9 in downtown Olathe Ks. from 9:00am - 9:pm. We distributed information on epilepsy and to had a raffle and drawing at our booth.
Two Days in Olathe-
Advancing Public Awareness of Epilepsy
by Lizbeth de Padua, M.D.
Inspired by Ann Lorenz, the mother of one of my patients, who established "Circle of Love and Life for Epilepsy", an organization that endeavors to increase public awareness and understanding of epilepsy, we came up with the idea of having a booth at one of the community celebrations, selling crafts that I had made in my "spare" time, all proceeds going to the Circle, and thence to the MABSI Foundation' s Epilepsy Fund.
After two exhausting but inspiring days at Johnson County's Old Settlers Days, we had made over $500 selling scarves, pins, scrunchies, and keychains, but more importantly had given our "Epilepsy Quiz " to over 300 people. People from all ages and all walks of life took the "quiz" left the booth more knowledgeable about epilepsy.
We discovered that though everyone knew that patients with epilepsy were neither retarded, crazy, or possessed by the devil, most were not aware that there was surgery that could rid patients of their seizures or thought that such surgery was still experimental, and many were not aware that there was an implantable device the patient's could potentially use to abort their seizures. Many were also under the impression that patient had to put up with the side effects of their medications in order to maintain seizure control..
Most heartbreaking was that we encountered many epilepsy patients who thought their seizures were "controlled", because I had them "only once in awhile". Many of these patients had been taking Dilantin, Tegretol, or even phenobarbital for many years, and were not aware that life could be better, that seizure freedom and/or freedom from side effects was even possible.
One young lady wandered into our booth wide-eyed, and almost tearful, because she had never seen anyone publicly do anything regarding epilepsy.
Two of our patients, with their families, spending the day at the fair, were thrilled to see us there. Ann Lorenz, as part of her efforts to increase public awareness of epilepsy, will put one of the patients, Chip Akers, in contact with a reporter from the Olathe News, so that his story of having become seizure-free from epilepsy surgery that we performed can be published. This story is of particular relevance, because this patient had undergone an epilepsy evaluation in St. Louis many years ago, and had been told then that there was nothing that could be done because his focus was in the dominant hemisphere. After over 30 years of having seizures several times a month, he is now seizure-free, with no speech deficits, and his family very impressed that his memory has actually gotten better since the surgery.
One question we asked nearly everyone in the "quiz" was which hospital had a comprehensive epilepsy program, KU Medical Center, St. Luke's Hospital, Research Medical Center, or all of the above. Some thought that Research had one (It did, sort of, until 2003...). Many thought that KU had one. Most thought all of them did. They now know that only St. Luke's has the only program in the greater Kansas City area that can offer all the services that epilepsy patients need to achieve the best possible quality of life. They left with one of our brochures, to pass on to the relative, friend, coworker, schoolmate or person in their church group who they knew to have epilepsy.
Though we all know that epilepsy is not a rare condition, even I was surprised to see that nearly everyone we spoke with knew someone who had the disorder. We were also visited by many nurses, EMTs, various employees of doctors' offices .
I don't mean to present this as a one-man endeavor. The fair ran from 9 a.m. to 9 p.m. Friday and Saturday, and our participation was a "labor of love"� on the part of several people: Christi Ledo and Denise Frye were there early in the morning on Friday to help set up the booth before they went to work, and came back after work and stayed until 9 p.m. the help man the booth and put away the merchandise for the night. Christi was there again for hours on Saturday, helping set up, administering the quiz through most of the day, and staying afterwards to help with things away. John Ledo was wonderful, bringing us supplies through out both the days, setting up our lighting for the nights, and helping us to dismantle and haul everything away at the end of the fair. The entire Lorenz family, particularly Ann, what responsible for planning and setting up the logistics of our booth, and paid half of the participation fee. Their friend Jerrica sold jewelry at the booth, and will be donating part of the proceeds to the cause. My daughter Christina was with me throughout both days, helping in sales and manning the cash register.
We plan to continue to do this, at fairs at various places in the metro area that we'd like our program to reach. Lee's Summit? Independence? Lawrence? I don't know how many direct referrals each fair will generate, but the return in terms of community goodwill, and increased public awareness of our program and public understanding of epilepsy, are worth the effort.
Any suggestions and assistance would be appreciated.
.
