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#WEGOHeathAwards Winners Series Podcast: Tiffany Kairos

2016  WEGO Health Awards winner, Tiffany Kairos, says her best advice for all patient leaders is to be authentically YOU – but to also utilize #hashtags! As the winner of Best in Show: Twitter, this patient leader ‘s twitter feed is one you won’t want to miss.

As an epilepsy fighter,  she is passionate about epilepsy advocacy, education, awareness, and support. Tiffany is the founder of The Epilepsy Network (TEN) Organization, which is known throughout the world and has an online support of over 21,000. She is also an epilepsy blogger and a contributing epilepsy blogger for The Huffington Post.

Tiffany looks at her diagnosis, not as a curse, but a blessing.  It has given her a wonderful opportunity to better herself in a multitude of ways and reach out to help others along their journeys as well.

“Epilepsy advocacy is my mission for as long as I live,” she shares.

WEGO Health and podcast host Shane Schulz had the chance to chat with Tiffany during the WEGO Health Awards to learn more about her advocacy journey and gain insight into what makes a winning Twitter feed! So sit back and take a listen, this is surely one patient leader you don’t want to miss! You can find the full interview on Spreaker and iTunes.
Listen to “WEGO Health Podcast – Tiffany Kairos” on Spreaker.

 

Don’t Miss!

2:16 – Shares her story of how and why she decided to become an awareness advocate.

5:35 – Gives some insight of her own journey with Epilepsy

8:50 – Learn why Tiffany doesn’t consider condition a curse but more of a blessing

 

To learn more about Tiffany’s journey, visit her blog as well as articles as a contributor to the Huffington Post.  

Connect with her on social media: TwitterInstagram & LinkedIn.

Connect with The Epilepsy Network (TEN) on social media: TwitterYoutubeInstagramFacebook & Pinteres

Missed the first episode of the WEGO Health Podcast Award Winners Series?  Don’t worry- check it out now!


Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Check out her blog and follow Kristen on Twitter and Facebook.

2016 Best Kept Secret winner, Lisa Cypers Kamen, Celebrates New Book Release

It’s safe to say that 2016 was a tough year and, with the start of 2017, things don’t seem much brighter. From political upsets to the loss of major icons, and anger-filled social media feeds to daily violent news reports, it’s understandable that stress levels are running high. Internationally recognized positive psychology coach and talk radio show host, Lisa Cypers Kamen’s powerful message of how to take control of your own happiness is not only relevant but desperately needed.

Internationally recognized positive psychology coach and talk radio show host Lisa Cypers Kamen’s powerful message of how to take control of your own happiness is not only relevant but desperately needed. “It’s not enough to just think happy thoughts,” says Cypers Kamen. “We must take action to create happiness.” And thankfully she’s sharing just how to do that in her new book, Are We Happy Yet? Eight Keys to Unlocking a Joyful Life, a no-nonsense fusion of science and heart, filled with proven tools and techniques for creating your very own “happiness revolution.”

In Are We Happy Yet? Cypers Kamen reveals her breakthrough system for cultivating sustainable happiness and well-being, regardless of life’s drama, trauma, or challenges. Through practical tips, tools, and exercises, she shows readers exactly how to boost their “Happiness-Factor” to new levels, and tap into the joy and peace they deserve. Through her wide-ranging, decades-long career, Cypers Kamen has redefined — for herself and many others, worldwide —the pursuit of happiness, even during life’s most challenging times. Are We Happy Yet? draws on that expertise and shows readers how to take the applicable principles of positive psychology, and start using it in their daily lives.

“Positive psychology focuses on what’s right with life here, now and tomorrow, rather than ruminating on what’s wrong with it and what happened in the past,” says Cypers Kamen. “Are We Happy Yet? helps readers embrace the absolute best parts of life, each and every day.”

Are We Happy Yet? is available for pre-order on Amazon, Barnes & Noble, IndieBound and neighborhood booksellers and will be released on March 20, 2017 —the United Nations International Day of Happiness.

Keep reading as Lisa gives you a taste of the powerful tools “Are We Happy Yet?” can offer!

(more…)

A Look Back on 2016 and the Cancer Moonshot Initiative

 

“For the loved ones we’ve all lost, for the families that we can still save…let’s make America the country that cures cancer once and for all.” This powerful statement from President Obama came just under a year ago, as he gave his final State of the Union Address. It was then, he announced a nationwide Cancer Moonshot initiative – an initiative with the end goal to cure cancer!

At the charge of this initiative we have Vice President Joe Biden. VP Biden has had a very personal connection with cancer. In May 2015, he lost his son, Beau, to brain cancer. Beau passed away at the very young age of 46. He was a lawyer by training, and joined the Delaware National Guard in 2003 serving as a major in the Judge Advocate General’s Corps. In 2008, he was deployed in Iraq – during his father’s run for Vice President.

Vice President Biden explained how the Moonshot is not necessarily a time bound campaign. It’s more than that. “The Cancer Moonshot is a movement that lives in communities across the United States and the world — and it will live long after we leave office,” He continued, “Mr. President, we can’t afford for it not to, because the need is too great and the promise even greater.”

Cancer Moonshot Summit

June 28th, 2016 the Cancer Moonshot Summit was hosted at Howard University in Washington D.C. Not limited to this location, mini-summits were held at more than 270 locations across the country. At this summit, VP Biden, along with over 350 researchers, oncologists, data and technology experts, patients, families and advocates, would come together to discuss the goal to double the rate of progress in cancer prevention, diagnosis, treatment and care.

Treatment

Huge strides have been made in cancer treatment over the last year. One method in particular has been immunotherapy.Immunotherapy is a method of treatment using one’s own immune system to work smarter and harder to combat disease. There are a variety of different immunotherapy treatment types, but one in particular that has shown hope this year is called monoclonal antibody drugs (anti-PD1 or anti-PD-L1).

This targeted therapy can be used on it’s own, or in combination with other types of treatments. The specific drug, Keytruda (generic name pemrolizumab), is one in particular that has been used to treat a variety of different types of cancer. This type of drug targets specific sites or proteins, within cancer cells. The pro to this is that it targets bad cancer cells and leaves your bodies normal cells alone, unlike traditional treatments like chemotherapy and radiation, that can actually hurt the rest of your body, while trying to get rid of cancer cells.

In October 2015, Keytruda was FDA approved to treat non-small cell lung cancer. Just over a year later in October 2016, it was approved as first-line treatment of certain patients with metastatic non-small cell lung cancer. This means, it is not only an approved treatment method, but it is actually the first option – as opposed to traditional treatments like chemotherapy, radiation and surgery. With this drug’s success, it is being used in new clinical trials for other cancers, like mesothelioma.

This is a huge feat, and goes to show that emerging treatment methods can really make a difference in how those with cancer are being treated.

To Infinity and Beyond 2016

Inevitably, along the way to finding a cure for cancer, there will be hurdles and barriers. Luckily, the first year of the Cancer Moonshot initiative has proven to be successful in terms of rethinking how we currently view and deal with cancer. More efforts will be put into technology, data, diagnosis, treatment and prevention. Eventually, the work being done can bring us to a cure. Along the way, the Moonshot will be bringing plenty of benefits to those affected by cancer!


screen-shot-2016-09-23-at-10-29-49-amThe Mesothelioma Cancer Alliance is dedicated to serving mesothelioma victims and their families. Make sure to follow them on Twitter and Facebook for the latest updates!

It is all about me and guess what? It is all about you, too!

September is here and so is Sharon Coyle-Saeed’s monthly blog post! Make sure to check back in October for her next post. Looking for Sharon’s post from last month? Click here.
Happy reading everyone!


It is all about me and guess what?  It is all about you, too!

By Sharon Coyle-Saeed

 

sharon 4 I was feeling completely overwhelmed with everything that was on my plate or that was about to be on my plate. With going into an advanced internship at graduate school, my newspaper job assignments increasing, classes starting, full time housewife expectations still alive and well, both children transitioning to new schools this year, support groups to admin, texts, phone calls, messages and emails to respond to from friends, family, and a new cardiology health discovery of a triglyceride level of 517 and a “suspicious old myocardial infarction” reading on my CT scan a few weeks ago, how does one digest all of that when you are missing your large intestine and the small bowels remaining are laden with adhesions?

sharonThe answer came to me when I visited my holistic chiropractor, Dr. Harry B. Schick. I frantically communicated my above concerns while waving my hands expressively like an Italian describing how to make gluten free eggplant rollatini. He calmly pushed his glasses back up the bridge of his nose and said, “Health and kids.”  I asked, “What?”  He clearly was not getting the intensity of my situation.  This man of many words, pun intended, repeated, “Health, kids and if those items are in check, finish your school.”
He role played scenarios. “So, Sharon there is a great class at the Open Center, want to go?”  I said, “Yes.” He said, “No, I would love to, but I am focusing on my health and kids right now.”  By George, I think I’ve got it.

sharon5Equipped with this focus, I tested the waters on several friends and family. Guess what? It was gosh awful! I was responded to with disappointment, sadness, anger, feelings got hurt and I felt terrible. However, something quickly happened.  Those who really cared and stuck around, did not take it personally(and it is not), they started to come around and say, “I am happy you are focusing on your health and kids.”

Something else happened. I started to focus on my health and kids. And I am no longer feeling so bogged down with all these choices and avenues. I am so clear and focused because my priorities are very streamlined. This is the first year since 2010 I am out of the hospital to attend not one, but both of my sons orientations and see them off to school. The smiles on their faces as they walk in with confidence knowing I have their back makes any disappointments from others fade.

sharon3Disappointments from others? Oh yes!  In the past few weeks since making this decision or carrying out this brilliant recommendation,  I have been called “selfish” too many times to count. I like to think of it as self-full!  I try to explain it in this way when those around shout, “It is NOT all about YOU!”

Well, actually it is not all about me.  It is about my health. If my health is not there, I will be in the hospital. I will not be able to wash my children’s clothes, help with their homework, make dinner, clean the home, be a present daughter, sister, friend, wife and support person. I will not be able to do anything. So, in actuality, it is NOT all about me, it is about keeping me healthy, so I can be there for YOU.

sharon2I love people. I love serving the community and helping others. I love family. Through self-care only can I even hope and pray to give back.  Filling one’s vessel with water is not selfish. Giving all of your water and having nothing left to give, only leaves us both dehydrated.

Today, I dropped my eldest son off at school, made pancakes for my youngest, cleaned my home, exercised on the bicycle, checked in with the online support group, had some great convos with friends and family, took my supplements/making sure I am staying hydrated, taking breaks when I need to,  and planning a trip to the Patriots vs. Giants tonight at Metlife Stadium. I have no idea about the rules of football. However, I do know that the memories made while being a present mommy for these two boys while they laugh at me as I ask who scored a homerun tonight will be priceless.

 

 


IMG_9124-240x300Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater.  Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from  Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.

 

 

 

 

Featuring Health Blogs Day 19

In honor of National Health Blog Post Month – we’re featuring health blogs and the bloggers who write them!

[Click the pictures to visit the blogs]

 


 

Trials & Tribulations of Being Type 1 Diabetic

@kellywpa

“I have several complications from diabetes.  I write about my health because I struggled for a long time trying to figure out how to manage blood sugar while dealing with gastroparesis.  I wanted to be able to share the things that I have learned with others.  Although there are a lot of bloggers writing about diabetes, not very many of us are writing about our struggles with complications.”

 



Caregiving Cafe Blog

@CaregivingCafe

“I blog about caregivers taking care of themselves on every level: physically, emotionally, spiritually and mentally. The work that we do is so important, as caregivers are literally the lifeline for so many chronically ill, disabled or fragile seniors.  Caregivers experience joys and trials as they provide compassionate care for their loved ones.  Often, they are also raising a family and working.  They deserve recognition and support from family, friends and community.
My blog is unique because I provide links, resources, information and support that come from organizations involved in caregiving, wellness or healthcare.  I also present a caregiver’s honest perspective.  I provide an inside look into caregiving and encourage caregivers to reach out for assistance in order to avoid becoming patients themselves.  Reach out, don’t burnout!”

 



Conquer In Spite Of

@ConquerLupus

“When I first got Lupus, I was very lonely. And the few blogs I could find on the topic didn’t feel relevant to what I was going through.
Conquer In Spite Of is a unique Lupus blog because I try to keep a positive attitude and I try not to let myself get into that “tragedy” mindset. I try to share the hope and the happiness and I try to find ways to relieve symptoms and live healthy and happy.”

 

 



My Brain Lesion and Me

@serenebutterfly

“I blog about my health condition, as neurological conditions are often very misunderstood as is invisible illnesses in general. So I feel it is important to raise awareness of conditions such as these and the effects that it can have.  My  blog is unique as my condition is unique!! Not many people have the condition and the symptoms are not understood and so the blog raises awareness and also aims to educate the wider public.”

 

 

 

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