Previous
-
The Centers for Disease Control and Prevention estimates about 2 million Americans have epilepsy and 140,00 new cases are diagnosed in the U.S. each year. In the U.S. , more than 90,00 children have seizures that are uncontrolled. Despite advances in treatment, epilepsy can be debilitating and even deadly. Link to Trish's blog, http://www.robertssister.com to share your stories and to find more interviews and resources -
Calvin and his mom Christy Shake. Christy's son, Calvin, was diagnosed with epilepsy when he was two years old. "I thought it was a benign condition where you take a pill and everything is okay. I didn't know there would be years of suffering, heinous treatments and their side effects. I didn't know that seizures can be uncontrollable. I didn't know people died from epilepsy." Read Christy's interview. -
Julie Hutchison and her daughter Chelsea Julie and Doug Hutchinson's daughter Chelsea had her first seizure during her eleventh birthday party. She died unexpectedly at 16 after having a seizure in her sleep. Julie and Doug created the Chelsea Hutchison Foundation to raise awareness about sudden and unexpected death (SUDEP) and to raise funds for trained seizure-response dogs. "Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective." Read Julie's interview -
Tom Stanton, Gina Restivo and her son Sam, Chip Gilbertson, Laura Forney and Troy Swanson. Gina Restivo has a nephew with epilepsy and has become an advocate through her connections with the Danny Did Foundation, an organization founded by Mike and Mariann Stanton after their four-year-old son Danny died from a seizure while sleeping. Read Gina's interview. -
Barbara Stallone and Teresa Stallone Teresa has epilepsy and is also a caregiver for her mother, Barbara, who was diagnosed with epilepsy last year. "Epilepsy is often misunderstood and carries many myths. If you are not sure, please lend an ear to listen and learn. Just because Person A can drive, it does not mean Person B can." Read Teresa' s interview -
Connor Doran Connor had his first seizure before his fourth birthday. When he was 14 he began to fly kites to relive anxiety and later became a finalist on "America's Got Talent. " "My peers treated me differently because the epilepsy caused anxiety for me. The kids took advantage of that and would try to scare me. They made fun of me as well. It made me feel like a target, the number-one person to pick on and be victimized." Read Connor's interview. -
Mandy Krzywonski Mandy had her first seizure at 8 but wasn't diagnosed until she was 13. Now 19, Mandy's seizures are uncontrolled. She writes a blog about her experiences at "My Life as Mandy . . . with Epilepsy" . "Sometimes there were weeks when I felt like I wrote my heart out and I didn't reach anyone. But something said to keep on going and good things would happen. Sure enough, I'd wake up to an email from someone thanking me for making them feel less alone." Read Mandy's interview. -
Robert Wright Robert has lived with intractable epilepsy almost his entire life. His seizures have caused numerous near-death experiences from falls to near drowning and have left him physically and mentally impaired. "I don't want to have epilepsy. I want it to stop completely." Read Robert's interview. -
Jacob Kriegshauser Heather Kriegshauser's son Jacob was diagnosed with epilepsy just after his fourth birthday, and while her daughter, Grace, was in remission from cancer. "The balance between advocating for your child and accepting that you really have no control over the prognosis creates an inner turmoil that is tough to reckon with." Read Heather's interview. -
Alex DeYoung Alex is the co-founder of Calm The Storm Within , a non-profit organization geared toward discovering the root cause of epilepsy. "People with epilepsy are not their disease. It does not define their life, and it shouldn't color your opinion of them." Read Alex's interview. -
Susan Noble Susan is the founder of Epilepsy Warriors Foundation, an organization devoted to raising awareness of the seriousness of epilepsy. "When you hear of the death of a child, or, as a parent, lose a child, you get angry and you want answers. When a child dies, it is one of the hardest things in life to understand." Read Susan's interview. -
Leslie Hammer with her daughter Sarah Hammer and their cat Midnight Leslie had her first seizure at 17. "I was in my parents' dining room when I saw a red, lit tree. No matter where I looked, there it was. Of course, I was hallucinating. But I didn't know it back then. I was also overcome with that terrible indescribable feeling something awful was about to happen." Read Leslie's interview. -
Kimberlee Nelson and her father Kurt Nelson Kimberlee's father was diagnosed with epilepsy at age 13. In her interview, Kimberlee describes what it was like to grow up with an epileptic father. "Dad still won't go swimming alone, for fear of having a seizure and drowning. He is by far the most independent person I have ever met and tries not to let epilepsy run his life. This one fear he can't get past." Read Kimberlee's interview. -
The Wright family: Rich, Trish, Judi, and Robert Trish Hughes Kreis's brother Robert had his first seizure when he was young, around five years old. He has intractable epilepsy, which means he doesn't have seizure control with medications or surgery. "I first started the website as a way to help others navigate caregiving issues such as finding assisted living facilities. It has developed into a passion for raising awareness about epilepsy and advocating for Robert as well as other working caregivers." Read Trish's interview -
"Through the interviews this month I learned so much about not only epilepsy but about the resilience and spirit of people. About overcoming obstacles and not giving up. About just wanting to be heard." Link here for the entire collection of interviews and resources.
What You Should Know About Comments on Sacbee.com
Sacbee.com is happy to provide a forum for reader interaction, discussion, feedback and reaction to our stories. However, we reserve the right to delete inappropriate comments or ban users who can't play nice. (See our full terms of service here.)
Here are some rules of the road:
• Keep your comments civil. Don't insult one another or the subjects of our articles. If you think a comment violates our guidelines click the "Report Abuse" link to notify the moderators. Responding to the comment will only encourage bad behavior.
• Don't use profanities, vulgarities or hate speech. This is a general interest news site. Sometimes, there are children present. Don't say anything in a way you wouldn't want your own child to hear.
• Do not attack other users; focus your comments on issues, not individuals.
• Stay on topic. Only post comments relevant to the article at hand.
• Do not copy and paste outside material into the comment box.
• Don't repeat the same comment over and over. We heard you the first time.
• Do not use the commenting system for advertising. That's spam and it isn't allowed.
• Don't use all capital letters. That's akin to yelling and not appreciated by the audience.
• Don't flag other users' comments just because you don't agree with their point of view. Please only flag comments that violate these guidelines.
You should also know that The Sacramento Bee does not screen comments before they are posted. You are more likely to see inappropriate comments before our staff does, so we ask that you click the "Report Abuse" link to submit those comments for moderator review. You also may notify us via email at feedback@sacbee.com. Note the headline on which the comment is made and tell us the profile name of the user who made the comment. Remember, comment moderation is subjective. You may find some material objectionable that we won't and vice versa.
If you submit a comment, the user name of your account will appear along with it. Users cannot remove their own comments once they have submitted them.
About Comments
Reader comments on Sacbee.com are the opinions of the writer, not The Sacramento Bee. If you see an objectionable comment, click the "Report Abuse" link below it. We will delete comments containing inappropriate links, obscenities, hate speech, and personal attacks. Flagrant or repeat violators will be banned. See more about comments here.