“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible.  When Jake was first diagnosed, we didn’t know that.  Now I know that…and that we’re not alone.”

- Actor Greg Grunberg, father of a 16-year-old with epilepsy

When it comes to epilepsy, what do you know now that you wish you knew sooner?

That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks.  Ultimately, the top vote getters in each of four regions will win iPads and other prizes.

Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy.  Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.

More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more.  Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure).  What are our members taking to control their epilepsy – and how well is it working?  Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.

If you’re living in an Internet-enabled household, chances are you have all or most of your banking information at your fingertips.  Can you say the same for your health information?  For many, these important records are locked away in filing cabinets or kept at your doctor’s offices.

Despite the fact that patients have a legal right to see and get copies of their medical records, the statistics on access are fairly surprising.

• 41 percent of the public have never asked their doctor for copies of their records

• 81 percent say they’ve never asked to receive their records electronically

That’s why the Department of Health and Human Service’s Office of the National Coordinator for Health Information Technology (ONC) is sponsoring the “What’s in Your Health Record?” Video Contest.  The goal is to encourage more patients to ask for copies of their health information and look at new ways to view and track it online.  Simply share your story on video (2 minutes or less) – including what you learned from taking a closer look at your records – and you could win one of several cash prizes ranging from $250 to $3,000!  All submissions are due by August 20, 2012.

Maybe you’ll find a critical omission in your records, such as a medication allergy.  Maybe you’ll find something curious or unexpected that prompts you to ask questions at your next appointment or do research.  Or maybe you’ll simply confirm that you’re up to speed on your health status.  In any event, having your full health information on hand empowers you and also ensures that your loved ones have all the details they need to help you receive the best care possible.

Ask for your records today and see what you find!  And if you’re a PatientsLikeMe member, don’t forget that you can input and monitor hundreds of different lab results – from cholesterol to Vitamin D to PSA levels – on your profile.

After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993.  Two years ago, she received a ligament allograft using donor tissue.  How does she feel about it all today?  Check out our interview with this transplant activist to learn how these experiences led her to found RockScar Love, a clothing company that celebrates sexy scars, the lessons they teach and the strength they create.

1.  Tell us about your post-transplant life today.

My life is amazing now.  When I was sick, I had goals of things I wanted to do over the years that I have started checking off my “accomplished” list.   I own my second house, I have learned how to surf, I currently do spin class for exercise, I own my own business.  My life has unlimited possibilities, and I am excited to see how I will continue to pay it forward.

2.  What led you to launch Rock Scar Love and the “Scars R Sexy” campaign?

I started RockScar Love Designs because I wanted to do something with my life that was inspiring.  When I was young and was coming out of my medical challenges I felt that I was “imperfect” and I had failed as a woman.  What I learned quickly was that imperfection was perfection!  That was what RockScar Love was for me….a way to spread that message and that belief.

“Scars R Sexy” is a campaign that came about through Live Wright Society and RockScar Love desiring to bring their two messages of “love your scar” and “pay it forward” to create a platform for people to tell their stories and show how they are making a difference in the lives of others.

3.  What kinds of scars and health conditions are represented in the campaign?

Any and all scars and medical conditions.  There is not a person on this planet who does not have some type of scar.  As a human race, most of our scars are on the inside.  I have my own collection of internal scars.  This campaign represents all of those scars – physical and mental.  If each person was a little bit more open with what they struggled with and what they have learned, then maybe the rest of society would struggle just a little bit less?

4.  I understand there’s a video contest planned.  How can our members participate?

Submit your “scar story” video to our Facebook page with “Scars R Sexy” in the link.  We will be uploading all of the videos to a website for public voting and will be posting very soon when the video contest voting dates will begin.  Watch our Facebook page!  Once the winning video story has been validated, then we will be awarding the winner with an iPad 2.

Did you make a health-related New Year’s resolution?  And are you using technology—such as a smartphone app or website—to achieve your goal?  Create a short video about it, and you could win prizes ranging from $250 to $2,000 if your video is selected as one of the best!

Sponsored by the US Department of Health and Human Services (HHS) and conducted via Challenge.gov, the Healthy New Year Video Challenge invites you to create a compelling video (2 minutes or less) about a New Year’s resolution for improving your health or that of a loved one, and how you will use technology to achieve your resolution.

“In order to empower individuals to be more active partners in their health, they need access to their information and tools they can use,” said Farzad Mostashari, M.D., Sc.M., national coordinator for health information technology.  “We are excited to harness the creativity of ordinary Americans to help promote the positive impact of the myriad health information technology tools and services on health and health care.”

For PatientsLikeMe members, you’re already using technology (meaning, our online health community!) to monitor and improve your health.  Here are some sample resolutions involving PatientsLikeMe that might make for a great video submission:

• Enter my complete health data at PatientsLikeMe so that I can spot correlations and patterns on my profile charts.
• Find out what PatientsLikeMe members with the same condition(s) are doing about a symptom that’s frustrating me.
• Chart my daily moods using PatientsLikeMe’s InstantMe survey to see what factors are affecting my mental health.
• Add my Lab and Test results at PatientsLikeMe so that I – and others like me – can learn from them.

All video submissions are due on Friday, February 16th, at 5:00 p.m. EST, so start brainstorming.  The idea is to inspire, motivate and educate others in a unique way, as all winning videos will be featured at HeathIT.gov.  For more details and contest guidelines, visit the contest website.

New to Health 2.0? Join the 125,000+ others at PatientsLikeMe to find information and support from those just like you – and begin monitoring your health with a host of tools and measurements. Cheers to health and technology in 2012!

The most common autoimmune disease in the US, psoriasis affects as many as 7.5 million Americans. Yet many people think it’s just “a skin thing.” To help debunk this misunderstanding and show all the ways psoriasis impacts one’s life, the National Psoriasis Foundation is holding the first-ever film festival for psoriasis and psoriatic arthritis, a painful joint condition that up to 30 percent of people with psoriasis develop.

The Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival invites you to show what life is really like with psoriatic disease, including all the ups and downs, frustrations and realizations. Not sure how to get started? You may want to think of a genre for presenting your story first. The festival invites submissions in seven different categories: action, youth, animation, horror, comedy, documentary and music video.

All videos submissions are due on August 28, 2011. Two semi-finalists will be chosen in each category for online voting by the public, beginning on August 30, 2011. Anyone with any condition can watch the videos and vote on their favorites. Then on September 6, 2011, the video with the most online votes across all seven categories will be named the Festival Grand Prize winner and take home a $500 Visa gift card.

For festival FAQs, rules and regulations, and to submit your video, visit www.psoriasis.org/pam.

When you’re diagnosed with an illness, there are many unknowns ahead. For example, what’s the best future possible for you? At PatientsLikeMe, we believe that no one should have to face these questions alone.

Like today’s patients, today’s youth are also facing uncertainties. With the world economy remaining in a precarious state, it can be hard to imagine a bright future or a rewarding career. That’s why we’re taking a slight detour in today’s blog post to tell you about a contest that’s near and dear to us – the Dare2Dream Challenge. Sponsored by Superfutures, a website that helps teenagers prepare for college and life, the Dare2Dream Challenge is a video contest that asks youth between the ages of 14 and 21 to share their dream career in two to five minutes.

You may be thinking that this sounds a bit like our recent PatientsLikeMe “Express Yourself” Video Contest. And you would be right. We saw how the medium of video allowed our members to tell their powerful stories in their own way, and we’re excited to see how creative today’s youth will get in expressing their hopes and dreams. Know a young person who could use an opportunity to dream this summer? Direct him or her to facebook.com/superfutures or superfutures.com to learn how to enter the contest.

Ten contest finalists will receive a “Cheggucation pack” from the textbook rental company Chegg that includes an iPad 2, a homework help subscription and more. But here’s the real carrot dangling for any young fan of the television show “Glee.” The grand prize winner will receive a free trip to Los Angeles to have lunch and a mentoring session with Iqbal Theba, who plays Principal Figgins on the hit show.

“When I was a teen, I ended up in college pursuing someone else’s idea for my future” says Theba. “I realized after an internship at a construction company that this was not for me. I started to think about what else I can do with my life. I had no idea I would become an actor. Now, I’m living my dream, and with this challenge, I can help others do the same.”

The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos.  Take a look and vote for your favorite!

PATIENTSLIKEME VIDEO CONTEST – VOTE HERE

There are 5 winners chosen for this contest and your votes decide 3 of them!  The creators of the top 3 voted videos will win American Express gift cards ranging from $150 – $500 (see contest rules for more details).  The deadline for voting is June 3, 2011. Anyone and everyone can vote, so be sure share to tell your friends and family.  Use “Share This” button on the video contest page to post on Facebook, Twitter (#PLMExpressYourself), etc.

Happy voting everyone!