May/June 2021
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"Be yourself; everyone else is already taken." - Oscar Wilde Epilepsy Services of Southwest Florida Bi-Monthly Newsletter |
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Greeting to our clients, physicians, donors, sponsors, supporters, and community members! We are still faced with many of the challenges we experienced in 2020. The COVID-19 virus is still evident, but we hope that you, your family and friends will be vaccinated soon. Epilepsy Services of Southwest Florida always puts the health, safety, and well-being of our clients, employees and stakeholders first. We are following the recommendations of the local and national authorities and are abundantly concerned for all members of our community. We have decided to temporarily suspend office visits, events and in-person support groups until further notice due to COVID-19. We are working remotely and are available via email or phone. All client clinic visits with their physician will be coordinated from our offices. These visits will be scheduled by your Case Manager and they will contact you regarding your appointment. |
Please call the following numbers or email to connect with your Case Manager: Fort Myers Office (also serves Naples) Sarasota office, Rebeca Elton: Sarasota & Bradenton office, Other inquiries: Prevention & Education information, In the event of an emergency, please call 911, as Epilepsy Services of Southwest Florida is not an emergency service organization. Our staff hopes you and your loved ones stay healthy and safe during this difficult time. |
Camila Shares Her Epilepsy Journey For The First Time With Millions Around The World
LANDOVER, Md. – Epilepsy Foundation announced the addition of Brazilian-American fashion and beauty entrepreneur Camila Coelho as an END EPILEPSY® Ambassador. Camila will serve as an advocate on behalf of, and for, people living with epilepsy by leveraging her platform to create awareness and educate others about epilepsy and seizures. She is one of 710,000 Latinos in the United States living with epilepsy and she shared her story with the world for the first time on International Epilepsy Day.
“I’m excited to support the Epilepsy Foundation in its fight to END EPILEPSY,” said Camila. “I have lived with epilepsy since I was a little girl. Every time I had a seizure, I’d wake up in the hospital extremely emotional. When a seizure happens, I don’t know that it’s occurring or remember it after, which makes it harder for my husband, family and friends. But I’ve learned to cope with my epilepsy by working with my medical team to manage this condition, and to one day hopefully create a family of my own. My hope is that others hear my story and know that epilepsy doesn’t have to keep you from pursuing your dreams or leading an enjoyable life.”
READ CAMILA'S STORY BELOW
WATCH YOUTUBE VIDEO ABOUT HER STORY
HER STORY
By
Camila Coelho
Person with Epilepsy
Monday, February 1, 2021
My epilepsy eJourney began at the early age of 9 when I had my first seizure. I was playing with my friend and my fingers and hand started closing by themselves. My friend thought that I was joking. I ran to my mom and then fainted. My parents took me to a neurologist who diagnosed me with epilepsy.
When the seizures kick in, I don’t know or remember it, making it much harder for my family, husband and friends. Every seizure I’ve had has put me in the hospital and leaves me extremely emotional. Yet, each seizure I have is different.
I take anti-seizure medication every night that controls my seizures completely. The medication that I take makes me very sleepy, but it is the one that works for me. I consider myself blessed to have never had a seizure while taking medication. If I don’t take it, there is an increase risk of having a seizure.
I do worry that my lifestyle, including travel and sometimes a lack of sleep could trigger my seizures. I make sure I eat well, don’t stay in the sun too long, and aim for 8-9 hours of sleep at night. Headaches are a sign that not everything is quite right, and I make sure I slow down, rest, and sleep more when I experience them.
I always felt different growing up. When my friends were out drinking, I couldn’t. I started to reject myself and my diagnosis, which led me to stop my anti-seizure medication when I was 17 without telling anyone. Not taking my medication caused me to have a seizure in school. Soon after, I realized that taking medication to keep me safe was nothing compared to what other people go through.
For the past 10 years, I’ve taken my medication as prescribed to keep me seizure free during my hectic lifestyle. I follow up with my doctor annually to get blood tests to monitor my medication levels and discuss my options for family planning.
In addition to making me sleepy, my medication can sometimes make me anxious or depressed, so I work to manage these feelings so that they don’t overwhelm me. In 2019, I needed to take a break and spent 4 weeks with my family in Brazil.
While I feel fortunate that my medication controls my seizures, I make sure to keep up a healthy lifestyle as well. I will often turn down professional engagements because I must put my health first. A lot of these opportunities, such as fashion shows and red carpets, seem very glamorous, but there are times when I can’t physically participate because these events may negatively impact my health.
I don't let epilepsy stop me.
I can’t drink alcohol because it triggers my seizures and it interacts with my medication. People always ask me why I don’t drink at parties because among my friends in Brazil and America, social drinking is considered a past time. However, I have never had a drink because I fear drinking could put my health and life at risk. I’m still passionate about going out dancing and letting loose with my friends, and I know I can do that without having a drink.
I don’t let epilepsy stop me from pursuing my dreams or leading an enjoyable life. My biggest goal is to use my story to educate our society and community about epilepsy and seizures. What I’ve learned in this journey is that there are many people out there struggling with accepting themselves and feeling different because of their epilepsy. I’m hoping that my story inspires others to share theirs so that together we can create awareness and end the stigma associated with this condition.
Camila lives in Los Angeles with her husband Icaro. Follow her on Instagram.
HELP US AT EPILEPSY SERVICES OF SOUTHWEST FLORIDA CONTINUE OUR SERVICES TO HELP THOSE WITH EPILEPSY IN OUR 8 COUNTY REGION. YOUR DONATION WILL BE DOUBLED THROUGH THE FLANZER MATCHING TRUST PROGRAM. CLICK ON THE BUTTON BELOW TO DONATE. PLEASE ENSURE YOU SELECT EPILEPSY SERVICES OF SW FL IN THE DROP DOWN MENU AT THE BOTTOM OF THE PAGE.
WE SINCERELY APPRECIATE YOUR SUPPORT!
Epilepsy Services Seeks Volunteer Board Members
Are you looking for a unique volunteer leadership opportunity? If you are committed to helping people who have epilepsy and no healthcare options, we are looking for you!
Epilepsy Services of Southwest Florida is looking for leaders like you to join our board of directors. Since 1967 our program has ensured that our work for uninsured adults with epilepsy pays off with outcomes that include a reduction in seizures, fewer trips to the emergency room and an overall improvement in quality life. Support of our program is an excellent investment and worthy of public support.
If you are one or more of the following, we would like to talk to you:
- Energetic and entrepreneurial business people who are not already overextended with other commitments, eager to put their enthusiasm toward improving our programs
- Community leaders and philanthropists willing to engage their peers to help people overcome the many challenges associated with epilepsy
- Health care professionals dedicated to changing the lives of those who deal with a variety of types of seizures and their consequences
- People who have experienced the difficulties of friends and loved ones affected by epilepsy
- People who have experience with supporting not for profit agencies
- People with a willingness and energy for coordinating fundraising projects and events
If you hold yourself to high expectations, you will find board service very rewarding. We are looking for people who will:
- Attend four board meetings annually
- Actively serve on one board committee
- Advocate for our needs in the community among your colleagues and peers
- Make an annual personal charitable contribution to the best of your ability
If you are interested in applying for a position on our board of directors, please contact Kevin Lindberg, executive director at klindberg@esswfl.org. to learn more about the application process.
Portions of the above information used with the permission of Cause & Effect, Inc.
"Ask the Expert" - a new way to ask your questions or express concerns:
In response to the government health recommendations regarding COVID-19, we have cancelled our monthly group support meetings. We want to "keep the conversation going" and would like to hear any questions or concerns you have regarding epilepsy. These can be questions about yourself, a loved one, friend, family member, neighbor, etc. We will gather questions and respond to them in upcoming newsletters. All questions posted will remain anonymous and we will "ask the expert" to respond to your question or concern. Listed below is a question we received this month.
"I have heard the Ketogenic and Atkins diets can help control seizures. Can you explain more about this?"
Ketogenic Diet:
The "classic" ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. It is prescribed by a physician and carefully monitored by a dietitian. It is usually used in children with seizures that do not respond to medications. It is stricter than the modified Atkins diet requiring careful measurements of calories, fluids, and proteins. Foods are weighed and measured.
Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines. The classic diet is usually not recommended for adults, mostly because the restricted food choices make it hard to follow. However, the modified Atkins diet does work well. This also should be done with a good team of adult neurologists and dietitians.
Several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications.
- Over half of children who go on the diet have at least a 50% reduction in the number of their seizures.
- Some children, usually 10-15%, even become seizure-free.
Modified Atkins Diet:
The modified Atkins diet (often abbreviated in the literature as “MAD”) is a change to the traditional “classic” ketogenic diet to make it less restrictive. Along with the MCT (medium chain triglyceride) diet and LGIT (low glycemic index treatment), it is one of three “alternative diets” used to treat patients with epilepsy.
Its history goes back to the early 2000s. Some families who had used the ketogenic diet for many years eventually stopped weighing and measuring foods. They had noticed that ketones still remained high and seizures stayed under control. It was first formally studied in children and adults who had never tried the ketogenic diet at Johns Hopkins Hospital by Dr. Eric Kossoff and colleagues in 2002. The first paper on this diet was published in 2003. A larger series of 20 children was published in December 2005.
This diet is now over 14 years old with greater than 500 patients published to date. Studies show it is very similar to the classic ketogenic diet in efficacy.
How Is the Modified Atkins Diet Different From The Ketogenic Diet?
Although the foods are very similar, there are key differences between the modified Atkins diet and the ketogenic diet.
- First, with the modified Atkins diet, there is no fluid or calorie restriction or limitation.
- Although fats are strongly encouraged, they are not weighed and measured. Most patients will consume plenty of dairy and oils.
- One of the biggest differences is that there are no restrictions on proteins. Typically 35% of calories for a patient on the MAD come from protein.
- Foods are not weighed and measured, but carbohydrate counts are monitored by patients and/or parents.
- It is started outside of the hospital and the person does not need to fast before starting the diet.
- Lastly, foods can be eaten more freely in restaurants and outside the home, and families (and neurologists!) can do it as well.
The diet is a "modified" Atkins diet as it allows for less carbohydrates than the traditional Atkins diet (15 to 20 g/day) and more strongly encourages fat intake. Please remember that no diet should be tried without a neurologist involved.
- About half had a 50% reduction in seizures after 6 months. Many were able to reduce medications
SPECIAL NOTE: You should talk with your neurologist and dietitian about how to start any type of diet and if it's the right decision for you.
For more information go to the Epilepsy Foundations website:
https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet
To submit a question, please email: bcoleman@esswfl.org.
In each issue of this newsletter we will feature members of our staff or volunteer board of directors with the intention that you will be able to get to know a little bit better the faces behind the names.
This issue we are featuring Matt Sandburg, ESSWFL Board Member
Hi, my name is Matt Sandburg. I joined the board of Epilepsy Services almost 10 years ago. When I joined the board, a dear friend of mine had just been diagnosed with epilepsy as an adult and I thought this would be a good way to learn more about epilepsy and also help the community. I am so glad that I got involved. I later met Kevin Lindberg, our current director, who, I believe, personifies our non-profit organization. He quietly does amazing work and truly helps vulnerable persons with epilepsy.
Outside of Epilepsy Services, I am a criminal defense attorney. I advise and represent persons who have gotten in trouble and have been charged with a crime. I have been happily married to my wife, Liz, for 15 years and we have two kids in grades 3 and 6, two dogs, a cat, a bearded dragon, and some fish. Other than keeping up with them, I enjoy training in Brazilian Jiu Jitsu. I am very thankful to be involved in Epilepsy Services and to have our new board president, Margie Yurewitch, share her story with the community.
DONATE TODAY!
We need your help! Donations are always welcome and without them we would not be able to do the work that we do. Your gift helps ensure our clients continue to receive critical medical attention including access to neurologists, diagnostic testing and assistance accessing medications as well as case management services and prevention and educational programs to the community at large. Here are current donation opportunities:
Louis and Gloria Flanzer Philanthropic Trust Matching Program:
The 2021 Flanzer Matching Gift Program will match any gift from $5 to $500 to Epilepsy Service of Southwest Florida. "Louis and Gloria Flanzer always believed in the goodness and generosity of people" said Eric Kaplan, co-trustee of the Flanzer Trust. Please support Epilepsy Services by donating today.
How to donate:
- Click on the donate button and you will be directed to a page where you can pay either by PayPal or Credit card.
- Type in the amount of your gift from $5 to $500.
- Designate Epilepsy Services of SWFL in the drop down menu at the bottom of the page to ensure your gift is directed to us.
- If you would like to make a donation by check, please make the check out to: The Louis & Gloria Flanzer Philanthropic Trust, 1843 Floyd Street, Sarasota, FL 34239 and indicate Epilepsy Services of Southwest Florida in the memo section.
Thank You!
Prevention & Education Services
If you would like the Community Outreach Coordinator to come to your business, your club meeting or your office, please contact Barbara Coleman, Community Outreach Coordinator at bcoleman@esswfl.org or 941-953-5988, Ext. 316 for a free presentation. Presentations can be done via Zoom to promote social-distancing.
Barbara will be glad to train your staff on how to respond to someone having a seizure or just make an informative presentation about epilepsy – the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer's disease.
About Us
The goal of Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self-management in order to lead as close to a normal life as possible.
Shop at Amazon Smile and support Epilepsy Services of Southwest Florida.
You can shop at Amazon Smile and the Amazon Smile Foundation will donate 0.5% of the purchase price of eligible products to our organization. Just select Epilepsy Services of Southwest Florida as your charitable organization. You can use your Amazon account or set up an account at Amazon Smile.
We sincerely thank you for your consideration and support!
For more info go to: https://smile.amazon.com/gp/chpf/homepage?orig=Lw==
Go to our website to learn more about our organization and take time to view our video: epilepsy-services.org
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