<?xml version="1.0" encoding="UTF-8"?><rss version="2.0" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:wfw="http://wellformedweb.org/CommentAPI/" xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:atom="http://www.w3.org/2005/Atom" xmlns:sy="http://purl.org/rss/1.0/modules/syndication/" xmlns:slash="http://purl.org/rss/1.0/modules/slash/" > <channel> <title>Epilepsy Awareness Archives - Epilepsy Foundation Central & South Texas</title> <atom:link href="https://efcst.org/tag/epilepsy-awareness/feed/" rel="self" type="application/rss+xml" /> <link>https://efcst.org/tag/epilepsy-awareness/</link> <description></description> <lastBuildDate>Thu, 14 Mar 2024 21:26:34 +0000</lastBuildDate> <language>en-US</language> <sy:updatePeriod> hourly </sy:updatePeriod> <sy:updateFrequency> 1 </sy:updateFrequency> <generator>https://wordpress.org/?v=6.7.2</generator> <image> <url>https://efcst.org/wp-content/uploads/2020/08/transparent-flame-50x50.png</url> <title>Epilepsy Awareness Archives - Epilepsy Foundation Central & South Texas</title> <link>https://efcst.org/tag/epilepsy-awareness/</link> <width>32</width> <height>32</height> </image> <item> <title>Cheers For A Cause Gala</title> <link>https://efcst.org/event/cheers-for-a-cause-gala/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Sat, 20 Apr 2024 23:00:00 +0000</pubDate> <category><![CDATA[Austin]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <guid isPermaLink="false">https://efcst.org/event/cheers-for-a-cause-gala-copy/</guid> <description><![CDATA[<p>Join us for a unique evening of celebration, silent auction, raffles, and fun! To register, Click Here!</p> <p>The post <a href="https://efcst.org/event/cheers-for-a-cause-gala/">Cheers For A Cause Gala</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[<div class="tribe-events-schedule tribe-clearfix" > <h2 class="tribe-events-schedule__datetime"> <span class="tribe-events-schedule__date tribe-events-schedule__date--start"> April 20, 2024 </span> <span class="tribe-events-schedule__separator tribe-events-schedule__separator--date"> @ </span> <span class="tribe-events-schedule__time tribe-events-schedule__time--start"> 6:00 pm </span> <span class="tribe-events-schedule__separator tribe-events-schedule__separator--time"> – </span> <span class="tribe-events-schedule__time tribe-events-schedule__time--end"> 10:00 pm </span> </h2> </div> <p>Join us for a unique evening of celebration, silent auction, raffles, and fun! To register, <a href="https://www.classy.org/event/cheers-for-a-cause-gala-2024/e540513">Click Here!</a></p> <div class="tribe-block tribe-block__events-link" > <div class="tribe-events tribe-common"> <div class="tribe-events-c-subscribe-dropdown__container"> <div class="tribe-events-c-subscribe-dropdown"> <div class="tribe-common-c-btn-border tribe-events-c-subscribe-dropdown__button"> <svg class="tribe-common-c-svgicon tribe-common-c-svgicon--cal-export tribe-events-c-subscribe-dropdown__export-icon" viewBox="0 0 23 17" xmlns="http://www.w3.org/2000/svg"> <path fill-rule="evenodd" clip-rule="evenodd" d="M.128.896V16.13c0 .211.145.383.323.383h15.354c.179 0 .323-.172.323-.383V.896c0-.212-.144-.383-.323-.383H.451C.273.513.128.684.128.896Zm16 6.742h-.901V4.679H1.009v10.729h14.218v-3.336h.901V7.638ZM1.01 1.614h14.218v2.058H1.009V1.614Z" /> <path d="M20.5 9.846H8.312M18.524 6.953l2.89 2.909-2.855 2.855" stroke-width="1.2" stroke-linecap="round" stroke-linejoin="round"/> </svg> <button class="tribe-events-c-subscribe-dropdown__button-text" aria-expanded="false" aria-controls="tribe-events-subscribe-dropdown-content" aria-label="" > Add to calendar </button> <svg class="tribe-common-c-svgicon tribe-common-c-svgicon--caret-down tribe-events-c-subscribe-dropdown__button-icon" viewBox="0 0 10 7" xmlns="http://www.w3.org/2000/svg" aria-hidden="true"><path fill-rule="evenodd" clip-rule="evenodd" d="M1.008.609L5 4.6 8.992.61l.958.958L5 6.517.05 1.566l.958-.958z" class="tribe-common-c-svgicon__svg-fill"/></svg> </div> <div id="tribe-events-subscribe-dropdown-content" class="tribe-events-c-subscribe-dropdown__content"> <ul class="tribe-events-c-subscribe-dropdown__list"> <li class="tribe-events-c-subscribe-dropdown__list-item"> <a href="https://www.google.com/calendar/event?action=TEMPLATE&dates=20240420T180000/20240420T220000&text=Cheers%20For%20A%20Cause%20Gala&details=%3Cp%3EJoin+us+for+a+unique+evening+of+celebration%2C+silent+auction%2C+raffles%2C+and+fun%21+To+register%2C+%3Ca+href%3D%22https%3A%2F%2Fwww.classy.org%2Fevent%2Fcheers-for-a-cause-gala-2024%2Fe540513%22%3EClick+Here%21%3C%2Fa%3E%3C%2Fp%3E+&location=Hotel%20Van%20Zandt,%20605%20Davis%20St,%20Austin,%20United%20States&trp=false&ctz=America/Chicago&sprop=website:https://efcst.org" class="tribe-events-c-subscribe-dropdown__list-item-link" target="_blank" rel="noopener noreferrer nofollow noindex" > Google Calendar </a> </li> <li class="tribe-events-c-subscribe-dropdown__list-item"> <a href="" class="tribe-events-c-subscribe-dropdown__list-item-link" target="_blank" rel="noopener noreferrer nofollow noindex" > iCalendar </a> </li> <li class="tribe-events-c-subscribe-dropdown__list-item"> <a href="" class="tribe-events-c-subscribe-dropdown__list-item-link" target="_blank" rel="noopener noreferrer nofollow noindex" > Outlook 365 </a> </li> <li class="tribe-events-c-subscribe-dropdown__list-item"> <a href="" class="tribe-events-c-subscribe-dropdown__list-item-link" target="_blank" rel="noopener noreferrer nofollow noindex" > Outlook Live </a> </li> </ul> </div> </div> </div> </div> </div> <div class="tribe-events-single-section tribe-events-event-meta primary tribe-clearfix" > <div class="tribe-events-meta-group tribe-events-meta-group-details"> <h3 class="tribe-events-single-section-title"> Details </h3> <dl> <dt> Date: </dt> <dd> <abbr class="tribe-events-abbr tribe-events-start-date published dtstart" title="2024-04-20"> April 20, 2024 </abbr> </dd> <dt> Time: </dt> <dd> <div class="tribe-events-abbr tribe-events-start-time published dtstart" title="2024-04-20"> 6:00 pm – 10:00 pm </div> </dd> <dt class="tribe-events-event-categories-label">Event Categories:</dt> <dd class="tribe-events-event-categories"><a href="https://efcst.org/calendar/category/fundraiser/" rel="tag">Fundraiser</a>, <a href="https://efcst.org/calendar/category/fundraiser/gala/" rel="tag">Gala</a></dd> <dt class="tribe-event-tags-label">Event Tags:</dt><dd class="tribe-event-tags"><a href="https://efcst.org/calendar/tag/austin/" rel="tag">Austin</a>, <a href="https://efcst.org/calendar/tag/epilepsy-awareness/" rel="tag">Epilepsy Awareness</a></dd> <dt> Website: </dt> <dd class="tribe-events-event-url"> <a href="https://www.classy.org/event/cheers-for-a-cause-gala-2024/e540513" target="_self" rel="external">https://www.classy.org/event/cheers-for-a-cause-gala-2024/e540513</a> </dd> </dl> </div> <div class="tribe-events-meta-group tribe-events-meta-group-organizer"> <h3 class="tribe-events-single-section-title"> Organizer </h3> <dl> <dt class="tribe-common-a11y-visual-hide" aria-label="Organizer name: This represents the name of the event organizer." > </dt> <dd class="tribe-organizer"> <a href="https://efcst.org/organizer/efcst-san-antonio/" title="EFCST San Antonio" target="_self" rel="">EFCST San Antonio</a> </dd> <dt> Phone </dt> <dd class="tribe-organizer-tel"> (210) 653-5353 </dd> <dt> Email </dt> <dd class="tribe-organizer-email"> Events@EFCST.org </dd> </dl> </div> </div> <div class="tribe-block tribe-block__venue tribe-clearfix tribe-block__venue--has-map" > <div class="tribe-block__venue__meta"> <div class="tribe-block__venue__name"> <h3><a href="https://efcst.org/venue/hotel-van-zandt/" title="Hotel Van Zandt">Hotel Van Zandt</a></h3> </div> <address class="tribe-block__venue__address"> <span class="tribe-address"> <span class="tribe-street-address">605 Davis St</span> <br> <span class="tribe-locality">Austin</span><span class="tribe-delimiter">,</span> <span class="tribe-country-name">United States</span> </span> <a class="tribe-events-gmap" href="https://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=605+Davis+St+Austin+United+States" title="Click to view a Google Map" target="_blank" rel="noreferrer noopener">+ Google Map</a> </address> </div> <div class="tribe-block__venue__map"> <div id="tribe-events-gmap-0" style="height: 256px; width: 310px" aria-hidden="true"></div><!-- #tribe-events-gmap- --> </div> </div> <p>The post <a href="https://efcst.org/event/cheers-for-a-cause-gala/">Cheers For A Cause Gala</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>Teens Speak Up</title> <link>https://efcst.org/teens-speak-up/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Mon, 12 Apr 2021 17:21:39 +0000</pubDate> <category><![CDATA[Community News]]></category> <category><![CDATA[Advocacy]]></category> <category><![CDATA[advocate]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Epilepsy Research]]></category> <category><![CDATA[Policy]]></category> <category><![CDATA[Teens Speak Up!]]></category> <guid isPermaLink="false">https://efcst.org/?p=8387</guid> <description><![CDATA[<p>This year, we were honored to join the Epilepsy Foundation’s 2021 Teens Speak Up! & Public Policy Institute, to advocate for those living with epilepsy in Central and South Texas...</p> <p>The post <a href="https://efcst.org/teens-speak-up/">Teens Speak Up</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p>This year, we were honored to join the <a href="https://www.epilepsy.com/">Epilepsy Foundation’s</a> 2021 <a href="https://www.epilepsy.com/about-us/advocacy/get-involved-advocacy/teens-speak-public-policy-institute">Teens Speak Up! & Public Policy Institute</a>, to advocate for those living with epilepsy in Central and South Texas and across the country. Two of our very own Teen Epilepsy Advocates, Freeman Dando <em>(Austin)</em> and <a href="https://efcst.org/my-epilepsy-story-lily-flowers/">Lily Flowers<em> (RGV)</em></a>, met virtually with our Senators John Cornyn and Ted Cruz and Representatives Vincente Gonzalez and Roger Williams. </p> <p>Our advocates discussed critical issues, including funding for <a href="https://efcst.org/about-epilepsy/" target="_blank" rel="noreferrer noopener" aria-label="epilepsy (opens in a new tab)">epilepsy</a> programs and research at the Centers for Disease Control and Prevention (CDC) and policies to improve and protect patient access to medications and treatment.</p> <p>Epilepsy is the fourth most common neurological disorder but does not receive nearly enough funding for research. Lily and Freeman represent the 470,000 children affected by epilepsy in the United States. Their advocacy and bravery are helping improve lives in our community. </p> <blockquote class="wp-block-quote is-layout-flow wp-block-quote-is-layout-flow"><p> <strong>“Today was a great day…TSU 2021! While we were not physically walking the halls of Capitol Hill in DC, these two dynamic kids turned up the heat today to virtually meet with our state Senators and Congressional Representatives. </strong> </p><p><strong>When you are 15 years old, it takes a lot of bravery, tons of courage, a little push from us moms, and a nice purple shirt to share those life stories and their journey with epilepsy.”</strong></p><cite>Leanna Dando, mother of Freeman Dando</cite></blockquote> <p>Thank you, Freeman and Lily, for advocating for the more than 155,000 people living with epilepsy in Central and South Texas!</p> <p>The post <a href="https://efcst.org/teens-speak-up/">Teens Speak Up</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>5 Benefits of Mental Health Counseling</title> <link>https://efcst.org/5-benefits-of-mental-health-counseling/</link> <comments>https://efcst.org/5-benefits-of-mental-health-counseling/#comments</comments> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Tue, 28 Jul 2020 15:05:43 +0000</pubDate> <category><![CDATA[Community News]]></category> <category><![CDATA[Charitable Giving]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Mental Health]]></category> <category><![CDATA[Mental Health Counseling]]></category> <category><![CDATA[Online Giving]]></category> <category><![CDATA[San Antonio]]></category> <category><![CDATA[The Big Give]]></category> <guid isPermaLink="false">https://efcst.org/?p=7175</guid> <description><![CDATA[<p>For everyone, and especially those dealing with a chronic illness such as epilepsy, maintaining a balance between mental and physical health is important for your overall well-being. At the Epilepsy...</p> <p>The post <a href="https://efcst.org/5-benefits-of-mental-health-counseling/">5 Benefits of Mental Health Counseling</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p>For everyone, and especially those dealing with a chronic illness such as epilepsy, maintaining a balance between mental and physical health is important for your overall well-being. At the <a href="http://efcst.org">Epilepsy Foundation Central & South Texas</a>, we provide <a href="https://efcst.org/help/counseling/" target="_blank" rel="noreferrer noopener" aria-label="FREE mental health counseling (opens in a new tab)">FREE mental health counseling</a> for qualified patients. Here are 5 ways that our mental health counseling is improving the lives of our patients.</p> <h6 class="wp-block-heading">Communication Skills</h6> <p>For any patient, it’s important that they feel comfortable enough to openly discuss with their provider their concerns or problems. This is especially true for people with epilepsy. If a medication or treatment plan isn’t working, our patients need to be able to speak up. Mental health counseling can help improve a person’s communication and interpersonal skills.</p> <p>Plus, those who are dealing with a chronic illness are more likely to experience feelings of anxiety, irritability, or depression. With improved communication, a person experiencing these feelings are more likely to speak about it with their provider or with loved ones.</p> <h6>Self-Esteem</h6> <p>Chronic illness can take a toll on a person’s self-esteem. A person can feel as if they aren’t in control of their own body or even betrayed by their body. Mental health counseling can help improve self-esteem, confidence, and self-image. </p> <p>Self-esteem and confidence are essential for the health and happiness of our patients! We’re dedicated to improving the quality of life for our patients, and an improved self-image is important to that mission.</p> <h6 class="wp-block-heading">Stress Management</h6> <p>For some, stress or stressful situations can <a href="https://www.epilepsy.com/learn/triggers-seizures/stress-and-epilepsy" target="_blank" rel="noreferrer noopener" aria-label="trigger a seizure (opens in a new tab)">trigger a seizure</a>. Our patients can alleviate stress when they have someone to discuss this with! Also, mental health counseling gives patients tools for them to self-manage their stress and defuse stressful situations. Being able to manage stress effectively ensures that our patients can focus their energy elsewhere. </p> <p>Stress management can also help regulate sleep patterns. <a href="https://www.epilepsy.com/learn/triggers-seizures/lack-sleep-and-epilepsy" target="_blank" rel="noreferrer noopener" aria-label=" Sleep deprivation is another common seizure trigger (opens in a new tab)">Sleep deprivation is another common seizure trigger</a> and it’s important that our patients sleep regularly and have restful sleep.</p> <h6 class="wp-block-heading">Improved Relationships</h6> <p>A strong support system is important for our patients. They are relying on their providers, friends, and family throughout their epilepsy journey. Mental health counseling helps our patients build relationship skills to build stronger, trusting relationships with those they rely on the most. </p> <p>Improved relationships can also help decrease stress in patients and help build confidence. Improved relationships and a strong support system give epilepsy patients much-needed stability. </p> <h6 class="wp-block-heading">Quality of Life</h6> <p>Due to the stigma surrounding mental health counseling, most people focus more on their physical health, while neglecting their mental health. The reality is that seeking help to improve your mental health can be incredibly beneficial. </p> <p>Better mental health leads to improvement in physical health, as well as other aspects of a person’s life. Mental health counseling instills a sense of hope in the patient, improving their outlook on their own life. </p> <p>This year for <a href="https://www.thebiggivesa.org/organizations/epilepsy-foundation-central-south-texas">The Big Give</a>, give the gift of mental health counseling by donating to the Epilepsy Foundation Central & South Texas. Help us continue to improve the quality of life for countless individuals in our community </p> <p>The post <a href="https://efcst.org/5-benefits-of-mental-health-counseling/">5 Benefits of Mental Health Counseling</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> <wfw:commentRss>https://efcst.org/5-benefits-of-mental-health-counseling/feed/</wfw:commentRss> <slash:comments>1</slash:comments> </item> <item> <title>10 Things You Didn’t Know About Epilepsy</title> <link>https://www.youtube.com/watch?v=tv-cXQY1O08</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Tue, 21 Jul 2020 17:18:09 +0000</pubDate> <category><![CDATA[Community News]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Epilepsy Facts]]></category> <category><![CDATA[Online Giving]]></category> <category><![CDATA[San Antonio]]></category> <category><![CDATA[The Big Give]]></category> <guid isPermaLink="false">https://efcst.org/?p=7165</guid> <description><![CDATA[<p>The post <a href="https://www.youtube.com/watch?v=tv-cXQY1O08">10 Things You Didn’t Know About Epilepsy</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <figure class="wp-block-embed-youtube wp-block-embed is-type-video is-provider-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper"> <iframe title="10 Things You Didn't Know About Epilepsy" width="500" height="281" src="https://www.youtube.com/embed/tv-cXQY1O08?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe> </div></figure> <p>The post <a href="https://www.youtube.com/watch?v=tv-cXQY1O08">10 Things You Didn’t Know About Epilepsy</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>Team Epilepsy Ninjas</title> <link>https://efcst.org/team-epilepsy-ninjas/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Tue, 02 Jun 2020 13:16:57 +0000</pubDate> <category><![CDATA[Walk to END Epilepsy]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Epilepsy Walk]]></category> <category><![CDATA[Rio Grande Valley]]></category> <category><![CDATA[Walk to End Epilepsy]]></category> <category><![CDATA[Walk to End Epilepsy - RGV]]></category> <category><![CDATA[Walks]]></category> <category><![CDATA[Youth]]></category> <category><![CDATA[Youth with Epilepsy]]></category> <guid isPermaLink="false">https://efcst.org/?p=6687</guid> <description><![CDATA[<p>What’s your story? Team Epilepsy Ninjas is the name of our team for Walk to END EPILEPSY – RGV. Our team name stems from my son’s early love of the...</p> <p>The post <a href="https://efcst.org/team-epilepsy-ninjas/">Team Epilepsy Ninjas</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <h6 class="wp-block-heading"><strong>What’s your story?</strong></h6> <p>Team Epilepsy Ninjas is the name of our team for <a href="http://walk2endepilepsy.com" target="_blank" rel="noreferrer noopener" aria-label=" (opens in a new tab)">Walk to END EPILEPSY – RGV. </a>Our team name stems from my son’s early love of the Teenage Mutant Ninja Turtles and his ability to “ninja kick” his seizures with a positive attitude. </p> <p>Our Epilepsy Ninja had his first seizure when he was two months old, and our lives turned upside down. We were petrified of the unknown journey ahead of us. After his first EEG, his pediatric neurologist told us of Ethan’s diagnosis of <a href="https://www.epilepsy.com/learn/types-seizures/focal-onset-impaired-awareness-seizures-aka-complex-partial-seizures" target="_blank" rel="noreferrer noopener" aria-label="complex partial seizures (opens in a new tab)">complex partial seizures</a> with a secondary generalization. It was as if he was talking to us in a foreign language. At that moment, our epilepsy journey had officially begun. </p> <p>We started with genetic testing, MRIs, PET scans, and countless EEGs. He was much braver than we were. Then his seizures were happening multiple times a day where we couldn’t count how many he was having. Then, he was diagnosed with Infantile Spasms. At that moment, we knew we needed a level 4 epilepsy center. We drove six long hours to <a href="https://www.texaschildrens.org/" target="_blank" rel="noreferrer noopener" aria-label="Texas Children’s Hospital (opens in a new tab)">Texas Children’s Hospital</a> in Houston for more treatment options.</p> <p>Now, seven years into our journey, Ethan’s diagnosis is cortical dysplasia in his right frontal lobe, which caused his tonic seizures, absence seizures, and subclinical seizures. We have tried and failed eight seizure medications, including <a href="https://www.epilepsy.com/medications/cannabidiol-oral-solution" target="_blank" rel="noreferrer noopener" aria-label="Epidiolex (opens in a new tab)">Epidiolex</a> (FDA approved cannabis oil). </p> <p>Our seizure journey took a HUGE leap on March 16<sup>th</sup>, 2020. Our brave Epilepsy Ninja had a resection of his seizure focus, removing a portion of his right frontal lobe where the cortical dysplasia was. We are praying that by this time next year, we will be celebrating seizure freedom.</p> <h6 class="wp-block-heading"><strong>How did you hear about the Walk to END EPILEPSY? What made you decide to get involved?</strong></h6> <p>We heard about the Walk to END EPILEPSY through the Epilepsy Foundation Central & South Texas. We knew we wanted to take part in the Walk to raise epilepsy awareness in our community. As a family, we are involved with the <a href="https://chelseahutchisonfoundation.org/" target="_blank" rel="noreferrer noopener" aria-label="Chelsea Hutchison Foundation (opens in a new tab)">Chelsea Hutchison Foundation</a>, based in Colorado. This is a foundation that provides seizure monitoring devices to children to prevent <a href="https://www.epilepsy.com/learn/early-death-and-sudep/sudep" target="_blank" rel="noreferrer noopener" aria-label="SUDEP (opens in a new tab)">SUDEP</a>. </p> <p>However, we wanted to raise awareness and make a difference in OUR community, which will directly impact our Ninja. I strongly believe through awareness comes compassion, and in return, you get acceptance. That is what every parent of a child with epilepsy or a disability wants.</p> <div class="wp-block-image"><figure class="aligncenter size-large is-resized"><img fetchpriority="high" decoding="async" src="https://efcst.org/wp-content/uploads/2020/06/IMG_5780.jpg" alt="Purple Day at Ethan's School" class="wp-image-6696" width="545" height="300"/><figcaption><em>Purple Day at Ethan’s School, 2019.</em></figcaption></figure></div> <h6 class="wp-block-heading"><strong>Are you involved with the Foundation in any other way?</strong></h6> <p>I participate in the <a href="https://efcst.org/help/support-groups/">RGV support group</a>, which is a HUGE step for me. I had only shared our story in a raising awareness context. This time, sharing our story was meant to receive support from other mothers who are on the same journey as us. </p> <p>I was also part of the Walk to END EPILEPSY – RGV committee, helping as much as I could while working full time as an educational diagnostician and through Ethan’s pre-operation appointments in Houston, Texas. I learned so much through that process. Thank you, April Flowers and <a href="https://efcst.org/team/mary-saldivar/">Mary Saldivar</a>! I had raised awareness through social media platforms, through school districts, and with the city of Edinburg, so being a part of the committee was raising awareness at another level.</p> <h6 class="wp-block-heading"><strong>How has your participation helped you and your family? What does the Walk mean to you?</strong></h6> <p>Many times through the epilepsy journey, you feel alone. The Walk has helped us have that visual realization that we are not alone; that our family, friends, and community will unite to raise epilepsy awareness. Seeing a crowd of almost 500 people is an actual visual that we are supported. </p> <h6 class="wp-block-heading"><strong>What is your favorite part of the Walk to END EPILEPSY?</strong></h6> <p>There was a moment when I saw Ethan running past the finish line and look at his medal with pride. I got emotional thinking of everything this brave Ninja has gone through. Behind him was every obstacle he has overcome, and ahead of him is a bright future. </p> <figure class="wp-block-gallery columns-2 is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex"><ul class="blocks-gallery-grid"><li class="blocks-gallery-item"><figure><img decoding="async" width="768" height="1024" src="https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-768x1024.jpg" alt="" data-id="6689" class="wp-image-6689" srcset="https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-768x1024.jpg 768w, https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-500x667.jpg 500w, https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-600x800.jpg 600w, https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-225x300.jpg 225w, https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1-1152x1536.jpg 1152w, https://efcst.org/wp-content/uploads/2020/06/IMG_5782-1.jpg 1536w" sizes="(max-width: 768px) 100vw, 768px" /></figure></li><li class="blocks-gallery-item"><figure><img loading="lazy" decoding="async" width="768" height="1024" src="https://efcst.org/wp-content/uploads/2020/06/IMG_5781-768x1024.jpg" alt="" data-id="6690" data-full-url="https://efcst.org/wp-content/uploads/2020/06/IMG_5781.jpg" data-link="https://efcst.org/?attachment_id=6690" class="wp-image-6690" srcset="https://efcst.org/wp-content/uploads/2020/06/IMG_5781-768x1024.jpg 768w, https://efcst.org/wp-content/uploads/2020/06/IMG_5781-500x667.jpg 500w, https://efcst.org/wp-content/uploads/2020/06/IMG_5781-600x800.jpg 600w, https://efcst.org/wp-content/uploads/2020/06/IMG_5781-225x300.jpg 225w, https://efcst.org/wp-content/uploads/2020/06/IMG_5781-1152x1536.jpg 1152w, https://efcst.org/wp-content/uploads/2020/06/IMG_5781.jpg 1536w" sizes="auto, (max-width: 768px) 100vw, 768px" /></figure></li></ul><figcaption class="blocks-gallery-caption"><em>Ethan at the finish line, Walk to END EPILEPSY – RGV, 2019.</em></figcaption></figure> <div style="height:20px" aria-hidden="true" class="wp-block-spacer"></div> <h6 class="wp-block-heading"><strong>If you could tell someone who is newly diagnosed one thing, what would it be?</strong></h6> <p>Your journey will be unpredictable, and you must take it one day at a time. Find your tribe and keep smiling, knowing that tomorrow will be a better day!</p> <p>The post <a href="https://efcst.org/team-epilepsy-ninjas/">Team Epilepsy Ninjas</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>Defying a Diagnosis: Jason’s Story</title> <link>https://efcst.org/defying-a-diagnosis-jasons-story/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Fri, 20 Dec 2019 20:45:39 +0000</pubDate> <category><![CDATA[My Epilepsy Story]]></category> <category><![CDATA[Absence Seizures]]></category> <category><![CDATA[agriculture]]></category> <category><![CDATA[bexar county]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[ffa]]></category> <category><![CDATA[stock show]]></category> <guid isPermaLink="false">https://efcst.org/?p=6330</guid> <description><![CDATA[<p>At the Epilepsy Foundation Central & South Texas, we are constantly meeting extraordinary people. We love meeting people who defy other’s expectations of them. That was the case when our...</p> <p>The post <a href="https://efcst.org/defying-a-diagnosis-jasons-story/">Defying a Diagnosis: Jason’s Story</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p>At the <a href="https://efcst.org/">Epilepsy Foundation Central & South Texas</a>, we are constantly meeting extraordinary people. We love meeting people who defy other’s expectations of them. That was the case when our Assistant Director, Kimberly Martin, met Jason at the <a href="https://www.bcjls.com/">Bexar County Junior Livestock Show</a>. </p> <p>Jason was diagnosed with <a href="https://efcst.org/about-epilepsy/">epilepsy</a> when he was just three years old. “At around age 2, we started to notice that Jason would just space out,” his father said. “At first, we thought maybe he just wasn’t paying attention,” Jason father explains. But, they knew someone with epilepsy and worried that there might be something more going on. Jason was suffering from <a href="https://www.epilepsy.com/learn/types-seizures/absence-seizures">absence seizures</a> – a type of seizure that cause lapses in awareness which can look like someone simply staring off. </p> <div class="wp-block-image"><figure class="alignleft is-resized"><img loading="lazy" decoding="async" src="https://efcst.org/wp-content/uploads/2019/12/justin1-688x1024.jpg" alt="" class="wp-image-6333" width="196" height="292" srcset="https://efcst.org/wp-content/uploads/2019/12/justin1-688x1024.jpg 688w, https://efcst.org/wp-content/uploads/2019/12/justin1-500x744.jpg 500w, https://efcst.org/wp-content/uploads/2019/12/justin1-600x893.jpg 600w, https://efcst.org/wp-content/uploads/2019/12/justin1-202x300.jpg 202w, https://efcst.org/wp-content/uploads/2019/12/justin1-768x1143.jpg 768w, https://efcst.org/wp-content/uploads/2019/12/justin1.jpg 1242w" sizes="auto, (max-width: 196px) 100vw, 196px" /><figcaption>Jason showing his pig at the Bexar County Junior Stock Show</figcaption></figure></div> <p>Because of his diagnosis, Jason is unable to participate in a lot of activities, particularly sports. When he was younger though, he loved helping his brother care for his pig. Jason’s older brother was an <a href="https://www.ffa.org/">FFA officer</a> and let Jason help him feed, bathe, and walk his pig all the time. At the first show they went to as a family, they saw a boy with special needs showing pigs. Jason’s family immediately spoke with the FFA teacher and asked if Jason could be included. Of course, he said yes, and now, at age 13, Jason is a junior member of FFA and gets specialized one-on-one time. </p> <p>“Jason loves every part of taking care of his pig,” Adriana, Jason’s mother, said, “even when he loses, he’s there cheering on everyone else. The other students love having him around because he’s so positive.” </p> <p>Recently, at the Bexar County Junior Livestock Show, Jason won Reserve Grand Champion. “It was his first time winning at a show, and it was a huge confidence boost for him,” Adriana said. “He told his teacher, Mr. Sullaway, ‘I’m going to buy two pigs now, instead of one!’”</p> <p>Being a part of FFA and being accepted by his classmates not only has boosted his confidence, but it’s also helped him understand responsibility. “He knows that he needs to take care of his pig. Every day he’s out there walking her, training her, feeding her. No matter what, Jason is always trying his hardest and pushing himself to do his best.” </p> <p>In the future, Jason hopes to continue showing pigs and entering into even bigger shows. “Jason really wants to get into bigger shows, like the <a href="https://www.sarodeo.com/livestocK">San Antonio Stock Show</a>, and I know he can,” said Jason’s father. </p> <p>“The most important thing is that what Jason’s doing is just proof that if you give children with disabilities the opportunity to succeed, they will,” said Jason’s father. His family believes that Jason’s success will show other kids’ with disabilities that not only can they achieve whatever they put their mind too, but that it’s okay to have a disability. </p> <p>At EFCST, we look forward to seeing Jason succeed in the future, and we’re rooting for him as he continues on his journey! Jason and his family would like to thank Southwest ISD, his Ag teachers, especially Mr. Sullaway, FFA, and all those who support the FFA program.</p> <p>For more information about the Epilepsy Foundation Central & South Texas or if you’d like to share your story with us, please contact us at <a href="mailto:Staff@EFCST.org">Staff@EFCST.org</a> or call us at (210) 653-5353. Thank you, Adriana Arguello and Jason, for sharing your story with us!</p> <p>The post <a href="https://efcst.org/defying-a-diagnosis-jasons-story/">Defying a Diagnosis: Jason’s Story</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>My Epilepsy Story: A Volunteer’s Reason</title> <link>https://efcst.org/my-epilepsy-story-a-volunteers-reason/</link> <comments>https://efcst.org/my-epilepsy-story-a-volunteers-reason/#comments</comments> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Sat, 05 Oct 2019 14:27:14 +0000</pubDate> <category><![CDATA[My Epilepsy Story]]></category> <category><![CDATA[epilepsy]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[SUDEP]]></category> <category><![CDATA[Volunteer]]></category> <guid isPermaLink="false">https://efcst.org/?p=5903</guid> <description><![CDATA[<p>A Diagnosis My daughter Jamie was diagnosed with epilepsy when she was 13. One morning, while getting ready for school, she suddenly had a tonic-clonic seizure. We prayed that it...</p> <p>The post <a href="https://efcst.org/my-epilepsy-story-a-volunteers-reason/">My Epilepsy Story: A Volunteer’s Reason</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <h6 class="wp-block-heading">A Diagnosis</h6> <p>My daughter Jamie was diagnosed with epilepsy when she was 13. One morning, while getting ready for school, she suddenly had a <a href="https://www.epilepsy.com/learn/types-seizures">tonic-clonic seizure.</a> We prayed that it was an isolated incident, but then she kept having one seizure after another. That’s when Jamie was diagnosed with epilepsy.</p> <p>It took some time to find <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines">the combination of medicines that were right for Jamie.</a> A certain medicine would seem to work, but later on it wouldn’t. Thankfully, Jamie had an extraordinary pediatric neurologist who carried her through this tough period. He assured her having epilepsy would never stop her from living a full life and following her dreams. He was right.</p> <h6 class="wp-block-heading">The Importance of Support</h6> <p>Although her seizures were never fully controlled, the support of her doctors, teachers, friends and family made Jamie’s seizures only a small part of her life. She sailed through high school, performing in all the school plays, singing, dancing, and acting her heart out. </p> <p>When she was 18, she left home to attend college. Though I was nervous as her mother, I was proud of what Jamie had accomplished despite her diagnosis. After college, she moved to Florida to earn her Master’s degree in Family Therapy. Since her seizures were still active, she joined an online support group for young adults with epilepsy. Her support group helped her keep everything in perspective and continue on in her life. She never let her epilepsy hold her back. She loved what she did and she loved her life in Florida. Always helping others, Jamie interned at a homeless shelter and worked with a therapy group for foster families.</p> <h6 class="wp-block-heading">Remembering Jamie</h6> <p>One month before finishing her degree, <a href="https://www.epilepsy.com/learn/early-death-and-sudep/sudep">Jamie passed away from injuries that resulted from a seizure.</a> We lost a beloved daughter and the world lost a talented and compassionate therapist and person.</p> <p>Now, volunteering at the <a href="http://efcst.org">Epilepsy Foundation Central & South Texas</a> gives me an opportunity to honor Jamie and all the people who helped her on her journey. I am learning so much about how this organization is saving lives and making a true difference for many families. I’m honored to be a part of the Epilepsy Foundation as a volunteer. Someday, I wish to see a world without epilepsy. </p> <blockquote class="wp-block-quote is-layout-flow wp-block-quote-is-layout-flow"><p>“Today is purple day! And no, not wildcat purple, but epilepsy awareness purple! Many of y’all know that epilepsy has been something I’ve carried with me for many years. Although it isn’t something that I believe makes up my whole story, it has definitely influenced who I am and how I see the world. There have been many difficult, heartbreaking days, but the fact that I wake up every morning alive is a gift and makes many days really wonderful.</p><p> But this post isn’t just about me. I want to take time to praise my family, friends, teachers, professors, therapists, and doctors who have been active participants in my story. Y’all don’t know how grateful I am that you didn’t see it as scary, burdensome, or helpless. Y’all each used words and actions to write unforgettable messages that gave me courage and resiliency. Y’all are the reason I wear purple today! #purpleday” </p><cite>Jamie Marie Calomeni (August 10, 1994-April 8, 2019</cite></blockquote> <p>The post <a href="https://efcst.org/my-epilepsy-story-a-volunteers-reason/">My Epilepsy Story: A Volunteer’s Reason</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> <wfw:commentRss>https://efcst.org/my-epilepsy-story-a-volunteers-reason/feed/</wfw:commentRss> <slash:comments>4</slash:comments> </item> <item> <title>An Inside Look: Raising Awareness with a Scarecrow</title> <link>https://efcst.org/an-inside-look-raising-awareness-with-a-scarecrow/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Fri, 20 Sep 2019 14:06:23 +0000</pubDate> <category><![CDATA[An Inside Look]]></category> <category><![CDATA[Botanical Gardens]]></category> <category><![CDATA[Denise Acosta]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Jessica Strom]]></category> <category><![CDATA[Kathy Kraemer]]></category> <category><![CDATA[San Antonio]]></category> <category><![CDATA[Scarecrow]]></category> <guid isPermaLink="false">https://efcst.org/?p=5870</guid> <description><![CDATA[<p>To spotlight the people this Epilepsy Foundation Central & South Texas helps, check out our weekly blog called, “An Inside Look.” This week, read about how we’re raising awareness at...</p> <p>The post <a href="https://efcst.org/an-inside-look-raising-awareness-with-a-scarecrow/">An Inside Look: Raising Awareness with a Scarecrow</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p><em>To spotlight the people this Epilepsy Foundation Central & South Texas helps, check out our weekly blog called, “<a href="https://efcst.org/category/inside-look/">An Inside Look</a>.” This week, read about how we’re raising awareness at the San Antonio Botanical Garden.</em></p> <h6 class="wp-block-heading"><strong>Raising Awareness</strong></h6> <p>Part of what we do at the <a href="https://efcst.org/">Epilepsy Foundation Central & South Texas</a> is engage with our community to raise awareness about epilepsy. Our services cover <a href="https://efcst.org/service-area/">79 counties</a>, and with <a href="https://efcst.org/about-epilepsy/">one in 26 people developing epilepsy at some point in their lifetime</a>, we have the potential to reach close to 155,000 people. </p> <p>Still, why is epilepsy largely unknown? Epilepsy is equal in prevalence to cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. Despite that, there is still stigma that surrounds epilepsy and tons of misinformation floating around. </p> <h6 class="wp-block-heading"><strong>San Antonio Botanical Garden</strong></h6> <p>Last year, we were given the unique opportunity to participate in the <a href="https://www.sabot.org/">San Antonio Botanical Garden’s Scarecrow Trail</a>. Our scarecrow, Enda Epilepsy, was displayed at the Botanical Garden. She gave us the opportunity to engage with our community and raise awareness about epilepsy to people who otherwise wouldn’t have known about us! </p> <p>This year, the Botanical Garden invited us back, and we’re so excited to make another scarecrow! Starting on September 28, visitors can see our scarecrow displayed at the Botanical Garden’s Scarecrow Trail, once again raising awareness about epilepsy in our hometown, San Antonio!</p> <h6 class="wp-block-heading"><strong>Assembling the Scarecrow</strong></h6> <p>Our Program Director <a href="https://efcst.org/team/jesscia-strom/">Jessica Strom</a>, and our Program Associate <a href="https://efcst.org/team/denise-acosta/">Denise Acosta</a>, are gathering materials from Goodwill to build the scarecrow. “We are finding materials to build the scarecrow. We think it will be a Hawaiian theme, and our goal is to make it very pretty,” said Jessica. “The scarecrow brings awareness to the EFCST, and it puts our name out there, so it has to be great.” </p> <p>Jessica and Denise, along with our <a href="https://efcst.org/team/olga-tristan-rangel/" target="_blank" rel="noreferrer noopener" aria-label="Patient Specialist Olga Tristan-Rangel, (opens in a new tab)">Patient Specialist Olga Tristan-Rangel,</a> will be assembling the scarecrow with the help of some <a href="https://efcst.org/get-involved/volunteer/">volunteers</a>. </p> <h6 class="wp-block-heading"><strong>Picking the Palm Tree Fronds</strong></h6> <div class="wp-block-image"><figure class="alignleft is-resized"><img loading="lazy" decoding="async" src="https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-1024x768.png" alt="" class="wp-image-5877" width="280" height="210" srcset="https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-1024x768.png 1024w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-500x375.png 500w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-600x450.png 600w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-300x225.png 300w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-768x576.png 768w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow-520x390.png 520w, https://efcst.org/wp-content/uploads/2019/09/kathy-scarecrow.png 1280w" sizes="auto, (max-width: 280px) 100vw, 280px" /></figure></div> <p>Our <a href="https://efcst.org/team/kathy-kraemer/">Social Services Coordinator, Kathy Kraemer</a>, went to gather palm fronds to assemble the scarecrow. She enlisted the help of two teen volunteers, Josh and Caleb, who attended the Epilepsy Foundation’s <a href="https://efcst.org/help/youth-programs/#camp">Camp Brainstorm</a> this past summer. </p> <p>Josh and Caleb are both about six feet tall, and even they needed a ladder to collect the palm fronds. “We had to balance the ladder in my truck as we were trying to pop the palm fronds off the tree,” said Kathy. “We were using branch clippers, and after the fourth or fifth time cutting the leaves, the clippers broke!” This put a halt in the process, but Kathy explained, “We are going for a second run tonight to finish collecting the palm tree leaves!” </p> <p>Once the scarecrow materials are gathered, the team of staff and volunteers will finish assembling it, so that supporters can view the EFCST Scarecrow starting September 28, at the San Antonio Botanical Garden. </p> <h6 class="wp-block-heading"><strong>Visit the Scarecrow </strong></h6> <p>The dedication and hard work of the EFCST staff and volunteers is was makes this Scarecrow so special. This project really represents the dedication the EFCST family has to raising awareness — the first step to understanding is education.</p> <p>Jessica and Denise will visit the Botanical Garden on a weekly basis, to ensure that the scarecrow remains intact and beautiful. </p> <p>The <a href="https://www.sabot.org/event/scarecrow-trail-exhibit-2/">Scarecrow Trail Exhibit</a> is open from 9:00 am to 5:00 pm on September 28 until November 10. </p> <p>You can visit the San Antonio Botanical Garden’s <a href="https://www.sabot.org/">website</a> to learn more about the Scarecrow Trail and Contest. </p> <p>The post <a href="https://efcst.org/an-inside-look-raising-awareness-with-a-scarecrow/">An Inside Look: Raising Awareness with a Scarecrow</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>An Inside Look: La Llorona</title> <link>https://efcst.org/an-inside-look-la-llorona/</link> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Fri, 02 Aug 2019 13:06:47 +0000</pubDate> <category><![CDATA[An Inside Look]]></category> <category><![CDATA[Art]]></category> <category><![CDATA[Autism]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[La Llorona]]></category> <guid isPermaLink="false">https://efcst.org/?p=5646</guid> <description><![CDATA[<p>To spotlight the people the Epilepsy Foundation Central & South Texas helps, check out our weekly blog called, “An Inside Look.” This week read about Cindy Garcia, La Llorona, and...</p> <p>The post <a href="https://efcst.org/an-inside-look-la-llorona/">An Inside Look: La Llorona</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p><em>To spotlight the people the Epilepsy Foundation Central & South Texas helps, check out our weekly blog called, “<a rel="noreferrer noopener" href="https://efcst.org/category/inside-look" target="_blank">An Inside Look</a>.” This week read about Cindy Garcia, La Llorona, and using art to educate.</em></p> <p>Cindy Garcia, also known as <a href="https://www.facebook.com/LaLlorona.satx/">La Llorona</a>, is a San Antonio-based artist, mother, and advocate. Her daughter Ani has both <a href="https://www.epilepsy.com/learn/about-epilepsy-basics/what-epilepsy">epilepsy</a> and autism. Cindy is dedicated to spreading awareness about autism and epilepsy. Through her events, she connects the art community to autism and epilepsy nonprofit organizations.</p> <p> This Friday, August 9, she’s hosting an art show called <a href="https://www.facebook.com/events/448078132310690/"><em>The Upside Down</em></a>, inspired by the hit Netflix television show “Stranger Things” at <a href="https://brickatbluestar.com/">Brick at Blue Star Arts Complex</a>. Photo proceeds from this event will benefit the <a href="https://efcst.org/">Epilepsy Foundation Central & South Texas</a> and help people with epilepsy receive essential low- and no-cost services.</p> <p>When I spoke with Cindy, she was at Methodist Hospital with Ani, who is experiencing medical issues. </p> <h6 class="wp-block-heading"><strong>How did Ani get diagnosed?</strong></h6> <p><strong>Cindy: </strong>Well, I was at Methodist Hospital with my daughter Ani. At the time, I thought she was having some sort of reaction to something. </p> <p>I was scared, but I knew what was going on or so I thought. But then, the doctors told me that she was actually having <a href="https://www.epilepsy.com/learn/about-epilepsy-basics/what-seizure">seizures</a>. They <a href="https://www.epilepsy.com/learn/diagnosing-epilepsy">diagnosed her with epilepsy</a>. </p> <p>I was so confused. I couldn’t understand how that could just happen from one moment to the next. All of a sudden she had epilepsy? It made no sense to me. </p> <h6 class="wp-block-heading"><strong>What did you do to find out more?</strong></h6> <p>I did what any mother does, I went online and started researching. I looked for resources, answers, anything really.<strong> </strong>That’s when I found your [Epilepsy Foundation’s] website. There were so many links, so much information – types of seizures, what seizures look like – stuff like that. I didn’t know where to begin and a simple internet search brought me to you [Epilepsy Foundation]. </p> <h6 class="wp-block-heading"><strong>Wow, I can imagine how scary that is. I’m really glad that you were able to find us. What made you want to get involved with the Foundation? </strong></h6> <p>Just the fact that I didn’t know where to go, who to call, or what to do made me think, “I have to do something.” There must be so many people like me that have no idea what to do. </p> <p>The thing that was absolutely ridiculous to me is that I didn’t know there is a <a href="https://www.epilepsy.com/article/2017/3/epilepsy-and-autism-there-relationship">1 in 3 chance that someone with autism can develop epilepsy during adolescence</a>. 1 in 3 is a big number; that’s a big deal. </p> <p>I’m thinking, if my kid had a 33% chance of developing epilepsy, that’s something I want to know. How is this not being talked about; why didn’t I know this already?</p> <p>For example, if someone had told me I had a 33% chance of developing cancer after the age of 35, I would’ve looked into that; I would’ve educated myself. I should’ve been told. </p> <p>So, really, the reason I wanted to get involved with the Epilepsy Foundation is so that I can raise awareness and educate moms like me or artists like me. People need resources, and I want to give the Foundation a platform to give those resources to the people who need them.</p> <h6 class="wp-block-heading"><strong>What is La Llorona? When did it start?</strong></h6> <p>I started this in February of 2017 or 2016? Originally, I worked with a partner. That didn’t pan out. Every nonprofit I chose to benefit with art events usually had to do with autism or epilepsy, because that’s what I want to educate the community about and I think that bothered her. </p> <p>My intention with La Llorona was to create a platform where people in my community, mothers and artists, had easy access to nonprofits who have helped me. I just want to be able to provide resources for people who are in my shoes, and if I could combine my art with that, even better.</p> <h6 class="wp-block-heading"><strong>What do you hope to achieve with this art show, <em>The Upside Down</em>? What are you most excited about?</strong></h6> <p>I feel like my life was turned upside down when my daughter Ani was diagnosed with epilepsy. I’m so blessed that I’m able to afford her vitamins, her medications, and her <a href="https://www.texascompassionateaccess.org/">CBD</a>. For others though, it isn’t so easy. I love that <a href="https://efcst.org/help/emergency-medical-assistance/">the Foundation helps families in need with things like medication.</a> </p> <p><a href="https://efcst.org/help/">There’s so much help the Foundation has to offer.</a> Knowing how devastating it is to hear the diagnosis, to be in the situation, I hope I can bridge a gap between the Epilepsy Foundation and the community.</p> <h6 class="wp-block-heading"><strong>That’s amazing. I think your story will really resonate with our families. Tell me, what does epilepsy mean to you and what do you want people to know about it?</strong></h6> <p>If there’s anything that I want people to take away from this event, it’s that 1 in 3 statistic; 1 in 3 people with autism will develop epilepsy during adolescence. 33% is a devastating number and it’s crazy that I didn’t know about it. </p> <p>I consider myself very knowledgeable about autism, and somehow I didn’t know about that 33%. That large percentage means that this is prevalent. <a href="https://efcst.org/help/education-training/">That’s why it’s so necessary for people to be educated.</a> Had I been told about those odds, I would’ve been more prepared. </p> <p>Nothing <em>truly</em> prepares you for something like this, but if I had known then I wouldn’t have been so lost. I just need people to know that the Foundation is there to help them with services and information and that <a href="https://efcst.org/help/support-groups/">they’re not alone</a>. </p> <p>The post <a href="https://efcst.org/an-inside-look-la-llorona/">An Inside Look: La Llorona</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> </item> <item> <title>My Walk Story: Monica’s Journey to Seizure Freedom</title> <link>https://efcst.org/monicas-journey-to-seizure-freedom/</link> <comments>https://efcst.org/monicas-journey-to-seizure-freedom/#comments</comments> <dc:creator><![CDATA[EFCST]]></dc:creator> <pubDate>Fri, 21 Jun 2019 18:57:12 +0000</pubDate> <category><![CDATA[Walk to END Epilepsy]]></category> <category><![CDATA[Clinic]]></category> <category><![CDATA[Epilepsy Awareness]]></category> <category><![CDATA[Fundraising]]></category> <category><![CDATA[Living With Epilepsy]]></category> <category><![CDATA[Walk to End Epilepsy]]></category> <guid isPermaLink="false">https://efcst.org/?p=5409</guid> <description><![CDATA[<p>By Monica Santellana Diagnosis My name is Monica and I started having seizures when I was ten years old. I am from Friona, Texas, a very small town in the Texas...</p> <p>The post <a href="https://efcst.org/monicas-journey-to-seizure-freedom/">My Walk Story: Monica’s Journey to Seizure Freedom</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></description> <content:encoded><![CDATA[ <p><strong>By<em> Monica Santellana</em></strong></p> <h6 class="wp-block-heading">Diagnosis</h6> <p>My name is Monica and I started having seizures when I was ten years old. I am from Friona, Texas, a very small town in the Texas Panhandle. I am the only one in my family of four that has seizures. Despite taking a wide variety of medications, trying special diets, and having many doctor visits, my seizures continued to be uncontrolled.</p> <h6 class="wp-block-heading">New Treatment</h6> <p>I moved to San Antonio at age 20 and started being treated by the best doctor I could have asked for, Dr. Azreena Thomas. Because of her knowledge and love for her patients, I got a <a href="https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns">Vagus Nerve Stimulation (VNS) device</a>, and my seizures became manageable, but I continued to have seizures. </p> <p>Dr. Thomas is an epileptologist affiliated with Methodist Health System and is a longtime supporter of the <a href="https://efcst.org/">Epilepsy Foundation Central & South Texas.</a> An epileptologist is an adult or pediatric neurologist who specializes in the treatment of epilepsy. </p> <h6 class="wp-block-heading"> Surgery </h6> <p>When I was 28 years old, I became a candidate for brain surgery and Dr. Thomas helped me transfer to another amazing epileptologist, Dr. Charles A. Szabo. They made a great team together with epileptologist Dr. Lola Morgan, and neurosurgeon Dr. Alexander Papanastassiou. These doctors are affiliated with UT Health San Antonio and are all longtime supporters of the Epilepsy Foundation Central & South Texas.</p> <h6 class="wp-block-heading">Seizure Free</h6> <p>After three brain surgeries, three years of recovery, and lots of heartache and tears, I’m proud to say that I have been seizure free for almost six years. Now I am 34 years old, working in a local hospital, and am a proud advocate of the Epilepsy Foundation. </p> <h6 class="wp-block-heading">The Walk to END Epilepsy </h6> <p>I’m a leader of a running group which you can see on our Walk Team page <a href="https://www.flipcause.com/secure/team_fundraiser/NTA2ODA=/5053">Running DORKS (Disciples of Risen King)</a>. We run in 5Ks each month in order to support different causes (cancer, addictions, heart disease, and epilepsy).</p> <p>On November 2, we will be participating in the <a href="https://www.flipcause.com/secure/cause_pdetails/NTA2ODA=">Walk to END Epilepsy – San Antonio at the San Antonio Zoo.</a> It is because of this Foundation that I’m strong and healthy enough to be a part of this awesome running group. </p> <p>I am so thankful to the Epilepsy Foundation Central and South Texas for all they do to help people with epilepsy and seizures and their families. </p> <p>The post <a href="https://efcst.org/monicas-journey-to-seizure-freedom/">My Walk Story: Monica’s Journey to Seizure Freedom</a> appeared first on <a href="https://efcst.org">Epilepsy Foundation Central & South Texas</a>.</p> ]]></content:encoded> <wfw:commentRss>https://efcst.org/monicas-journey-to-seizure-freedom/feed/</wfw:commentRss> <slash:comments>1</slash:comments> </item> </channel> </rss>