6
Sep

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.

 

 

 

 

5
Aug

Feature Friday: Ross McCreery, CRPS/RSD Health Activist

“As a health activist community we need to continue our fight! People are starting to listen and our voice is starting to bring about change.”

A powerful, but exciting and true statement, especially from CRPS/RSD health advocate Ross McCreery, who works endlessly to make a difference.

image (2)When Ross failed to find the help he needed to diagnose and treat his CRPS, he started sharing his own journey with others. This, in turn, sparked a passion to help others who were fighting similar battles, but mostly prompted a need to educate and raise awareness for this rare condition. As Ross continued to network he found his voice by realizing that he “didn’t want to just sit around waiting for things to happen. I wanted to make whatever difference I could no matter how big or small. I just decided to put myself out there and jump in with both feet.”

And oh did he jump! Frustrated from the doctors, physicians and government not really understanding his illness, he decided to do some research into his Provincial and Federal Health Care just last year. Unfortunately, his research revealed just how little was being done in research and care for those affected by CRPS. So it became Ross’s mission to raise awareness and bring change: addressing the lack of education and expertise needed to diagnose and treat individuals with CRPS, and working with the government to make sure it recognizes chronic illness for what it really is.

With his advocacy, he hopes to see more funding and research going into findiFun Facts With (1)ng the cures for his illnesses. He also hopes his efforts will improve the interaction between patients, healthcare and the government. Ross recognizes that chronically ill patients are often told that their issue is “all in their head” which can invalidate the patient’s voice, but he refuses to sit back and let the injustice continue. Ross has sent letters to the Premiere, Health Minister and other officials in an effort to make this change an important initiative.

Fortunately, his impressive efforts have brought great success! Ross contacted his Provincial Government and was successful in having a CRPS Awareness Day for the Province of Saskatchewan. Ross plans to hold an event on this day with goal of not only raising awareness, but also raising funds for research and education. He hopes that one day, CRPS Awareness Day will become nationally in Canada!

If you’re not already feeling completely and utterly inspired from what Ross has accomplished, consider this recent quote from the outstanding advocate himself: “…you can’t make a difference if you’re sitting on the sidelines waiting for things to happen.” Instead, he advises us to find the courage within yourself to take action and “…believe in yourself and know that you can make a difference.”

Ross is clearly an advocate to admire and he definitely deserves the support and respect of the online health community, so head over to Ross’s blog and make sure to follow his twitter and Facebook account in order to stay up to date with CRPS Awareness Day!


Kristen LongKristen Long, WEGO Health Activist Awards Coordinator is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen onTwitter andFacebook.

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26
Jul

My First TEDx Talk (And How I Got It)

From a happy-go-lucky musical theatre teen, to surviving sexual abuse, a coma, six years without food or drink, and 27 surgeries, it’s been a very long, detoured journey, and it still isn’t over yet.

But what makes the journey meaningful, and ultimately rewarding, is the ability to share, and know that you can possibly help someone through their own “detours.” Something I’ve learned over time, is that a Detour is Not a Dead End – which was the title of my first TEDx Talk!

I gave my TEDx Talk this April, and finally…it’s out!

Giving the talk was a thrilling experience.  Even being such a shameless musical theatre ham that I am, this was the most nervous I’ve ever been.  Actually, I didn’t realize how nervous I was until I was done…and I started basically hyperventilating!

Follow Your Detour, Find Your Flower | Amy Oestreicher | TEDxSyracuseUniversity

At 18 years old, Amy Oestreicher had her life all figured out: go to college, star on Broadway, and conquer the world. When a blood clot literally caused her stomach to explode, Amy’s life took some unexpected “detours.”

“How do you get a TEDx Talk?”

Many people have reached out to me and have asked “what it takes” to “get” a TEDx Talk.

Amy2Something I’ve learned along the way, like everything else, and I hate to say this, but there is no “quick easy way” to get a TEDx Talk…or anything else, to be honest.  When I make up my mind I sort of take on an all or nothing mentality.   Moderation is definitely not my forte!

“Getting” a TEDx Talk took hours of googling calls for speakers for a few months, then writing a ton of essays – an application for TEDx is basically like applying for college. You have to write many well-crafted essays and it’s really not just about being a good motivational speaker with an inspiring message.

Although difficult to finally “get” a TEDx talk, it was one of the most rewarding experiences of my life.  I’ve learned, through over a decade of medical crises, that we are able to heal when we tell our stories. And that is precisely what I did.

A TEDx talk tells a story.  Like their catch phrase says, TEDx is all about “ideas worth spreading.”

Amy3Who is TED?

Ted is not a person, although I’m sure he would be a very intelligent person. TED actually stands for Technology Entertainment and Design.  TED Talks are all about ideas that are worth spreading, to better ourselves and our world.

My idea worth spreading? That someone who follows life’s unexpected detours and searches for the flowers along the way to make their journey meaningful is, in fact, a Detourist.

Detours Worth Spreading

I felt that this idea was worth spreading, simply because when I started to approach my personal journey as just a detour in life that I could navigate myself, it really made the bumpy ride ahead of me  a lot easier to manage.  Suddenly, I felt like I had control of the unexpected path.  Being a Detourist empowered me with a sense of ownership, at a time when life felt very uncertain.  (You’ll have to watch the talk to find out more!)

Amy4

So I figured it could help other people too.

Detours in life can be tough to navigate. That’s why I call myself a Detourist.

amy5

Why I’m a Detourist

My stomach exploded. (Seriously – it’s in the talk.)

My life didn’t go exactly as I planned it – but does anyone’s?

amy6A Detourist travels along detours – simple enough.  But in addition, a Detourist embraces those unexpected routes as opportunities for growth, change and self-fulfillment.  I hope to serve as living proof that a detour can lead to unexpected blessings.  Because of my Detour, I’ve learned so much about myself, my world, and the strength I never even knew I had.

Detours Keep Going…

As the nature of detours go, after I gave this talk, my life took another detour – in the shape of a very unexpected and upsetting divorce.  So although the talk has an “unfinished” ending, that is truly the nature of detours – by trusting our path, one foot in front of the other, with time, we eventually find our flower.  Sometimes, you don’t really “love” your detour. But you still can trust it.

I still feel that through sharing our own detours, even if they’re not so great in the moment, makes us all stronger. So that’s why I share. Moving forward, trusting our detours, one day at a time.

Hope you enjoy the talk, and feel free to share – the more we share our detours, the easier they are to navigate.

What is your idea worth spreading?

Watch the video here.


Amy Oestreicher B&W 2006

 

All artwork was created by Amy on her detour. Learn about her speaking, or catch her touring Gutless & Grateful, her one woman musical, to theatres, colleges, conferences and organizations nationwide.  Learn about her mental health advocacy programs for students, and find out how to take part in the #LoveMyDetour movement, and learn about her upcoming book, My Beautiful Detour at www.amyoes.com.

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22
Jul

Feature Friday: Amy Ohm, CEO of Treatment Diaries

For the 43% of Americans that suffer from chronic conditions, the feeling of loneliness is nothing new. Whether it’s a new diagnosis or a pre-existing condition, patients look to Google for answers: endlessly searching for treatments, some direction and a glimpse of hope. But more often than not, patients are left feeling they are the only ones suffering with their condition. This is an experience cancer survivor, Amy Ohm, knows all too well.

Amy Exec Photo - Color[1]After her diagnosis in 2004, Amy turned to the Internet searching for hope and insight. What she needed to find was the transformed and improved outlook of a previous patient, who could reach out and say “Hey I’ve been where you are, here’s what I did…” Unfortunately, all Amy could find was daunting clinical perspectives. This encounter inspired her to create a community where people could share their experience, allowing patients to improve their personal health journey by learning from fellow patients.

Get To Know Lori-Ann HolbrookFilling this need for connection, Amy created TreatmentDiaries, an online healthcare platform that unites patients, caregivers and support systems for the private and anonymous exchange of personal health related experiences. The platform works as an interactive diary, where users can anonymously post about their health journeys, sharing their day-to-day experiences for others to read and learn from. The anonymity element provides patients the opportunity to connect with those they can relate to without disclosing their identity,
which Amy believes “…gives many the desire to share more freely and learn from those who understand the journey.”

Although TreatmentDiaries already supports users in over 100 countries and well over 2,000 conditions tied to millions of diaries, Amy continues to focus on growing the patient community. With continued growth, Amy hopes TreatmentDiaries will become “…the defacto standard in digital health for patient communities across the healthcare continuum”. It’s a big goal, but the impact an empowered patient can have on an individual just starting their health journey is even bigger!

tdIt is quite obvious TreatmentDiaries is taking the online health community by storm, but Amy admits she was nervous to start the platform. Her lack of clinical background made entering the healthcare realm pretty intimidating. She now, however, is more than grateful for the opportunity and all the relationships she has established. She advises anyone interested in becoming a health advocate to “Create a plan and follow it. Stick with it and see it through, but be open to pivoting to support the evolution of your efforts.”

Interested in TreatmentDiaries or know someone who could benefit? Check out the website today, the more patients that join, the more inspiration there is to share!

Patients have the power in this!

 


Kristen LongKristen Long, WEGO Health Activist Awards Coordinator is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen on Twitter and Facebook.

 

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30
Jun

Project Scleroderma’s Dear Scleroderma

Project Scleroderma is a 501(c)3 non profit organization with the primary purpose to dramatically increase the global level of awareness for a rare auto immune disease, scleroderma. After writing, filming and producing a feature length documentary film about the disease, our organization debuted “Project Scleroderma: Beneath The Surface” in 2015.

Now, in 2016, we are moving forward by producing a second wave of patient stories to be shared via social media. With this approach we are working to spark a ripple effect of awareness all around the globe with as many views and shares of these videos as possible.

Our most recent project is a documentary web series, titled “Dear Scleroderma”, which will highlight the stories of several young women who are working to raise awareness for scleroderma while simultaneously battling this awful disease. The first episode of the series features a young woman named Jessica Massengale and her social media community, “Scleroderma Strong”. Jessica is an amazing young woman, who inspires her entire community of scleroderma followers on a daily basis with her hopeful and empowering quotes, videos and insights into the disease she herself battles as well.

This episode is just the first of several episodes to be released in 2016, each with its own powerful message of hope and inspiration in the face of adversity. Our intention is to continue to educate the world about this disease, and to shed light on not only the physical toll this disease can take, but the emotional burden as well. We hope to spark compassion and understanding in our communities for the patients who suffer from this disease and to let scleroderma patients everywhere know that they are not alone.

We are working to rally a large collaborative effort to share our web series as far and wide as possible in our continued efforts to increase the global level of scleroderma awareness.

Make sure to watch this first episode:

Project Scleroderma

Today, June 29th, is World Scleroderma Day. Project Scleroderma would like to recognize this very important day by sharing the first episode in our brand new web series for awareness, called “Dear Scleroderma”. Project Scleroderma, together with New Pace Productions, is excited to share the story of Jessica and her Scleroderma Strong community!

Please join us in sharing this empowering, inspirational and educational series, and stay tuned for more to come from Project Scleroderma!


ChristyMcCaffreyHeadshotChristy McCaffrey is the Executive Director of Project Scleroderma. Project Scleroderma is a 501c3 Non Profit organization with a primary mission to dramatically increase the global level of awareness for a rare auto immune disease, scleroderma. Christy lost her mother in 2009 to this disease and was thus inspired to help create awareness. In collaboration with New Pace Productions, Project Scleroderma released a full length documentary in 2015, followed by a documentary web series in 2016.

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21
Jun

Reclamation Runway

There are 100k+ health activists in our network who spend countless hours pulling together amazing events to spread awareness, hope and raise money.

AnnMarie is one of those patient advocates out there making a difference.

The following blog post has been written by AnneMarie and depicts a gorgeous event she held to help empower women. We may not have had the pleasure of attending the event in person, but if you take a scroll through the photos that were captured it’s easy to see what the energy was in that room.

This is a perfect example of a patient impacting the lives of so many! We’re happy to highlight this wonderful event here on the blog today.

Reclamation Runway

By AnneMarie Otis

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It all started when I was DX with lymphedema and I thought this sucks.

No really wearing this ugly sleeve sucks. I feel like a patient every damn day.

I wanted to still have style so I found Lymphedivas. And behold they had everything I needed in a sleeve-style, swag, comfy and they fit my personality.

I wondered how many others knew about them. As I researched, I found more and more stylish items to make this crappy disease a little less crappy and a little more fashionista.

AnaOno has a line that is so cute who can tell it has drain holders?

I had to share this.

So I contacted Lisa Butler of Syracuse Fashion Week and she said let’s do this. A fashion show where all the models have had cancer or are dealing with it and they will be rocking items that helps them through treatment.

BRILLIANT. Now to get the community on board.

I reached out to my connections. Within days, I had models that were willing to go outside their element and reclaim the runway. To regain a little of themselves on that catwalk. They were excited, nervous and honored to be part.

One of my dear friends, Donna, was ready to strut even though her Stage 4 diagnosis had taken a turn and she was in the hospital.  Donna died one week before the show, but her spirit and energy were clearly there that day as we all felt her Bronx strong attitude.

The models needed pampering, so Lisa reached out to her team and Shannon pulled together a group of kick ass makeup and hair stylists. They all were eager to do whatever each model wanted this was about them, it was their day.

Dinosaur Bar B Que was were the show would take place and they could not wait to set the stage. The Degenerators  rocked the house before the the ladies came out and they did a killer job.

Our desserts were amazing and Half Moon Bakery and Bistro fit all taste buds with a regular, vegan and gluten free cakes!

Paparazzi lined the stage and the pictures were fabulous- Daniel Ware Photography, Ana Gil Talyor Photography, Natalia Russo Photography  .

Did I say that their services were donated!? Yes, the community believed in this so much they donated their amazing talent. And I have not even talked about what the models wore yet!

Each model walked twice and they got to keep everything, yes everything!

So the fantastic clothes that help them through treatment they do not have to give back, amazing right?

Turban Diva stunning head wraps and Bwell11 bandtanstik with their bandiva look wonderful.

Blue Canoe AnaOno Spirited Sisters-Healing Threads Radiant Wrap The Brobe all designed for surgery and treatment were showed just how adorable they are.

Red Fern Lingerie and Jamu Australia gave woman hope that there can be cute pocketed bras.

Circles of Change reminded woman that everybody is beautiful and the we are strong!

Wrapped in Love and LympheDiva gave woman the choice to look cute and be fashion forward.

Pauir Athletic and Jill’s Wish proved we are never alone together we are in this, side by side.

The show ended with a BANG. Two time cancer survivor came out with her chest painted in a black tutu. She empowered everyone that scars to not make us who we are not even for a moment.

Carmelo’s Ink City did a spectacular job with the amount of time he had!

This event gave woman hope that they can still be super cute even though they feel horrible.

NO, it will not cure cancer, but it can have them gain a little of themselves back. It brought together a fashion community to the cancer community raising money for Cancer Connects which keeps it in our town. Part of the money did go to Jill’s Wish too which helps on a national level.

It is events like this that show we can make a difference, we can take some of ourselves back from cancer and we can do it with style!

Reclamation Runway is about reclaiming yourself, regaining what cancer took away.

Finding yourself in the middle of fear, sadness and anger and turning that into power.

And that is exactly what it did.

Make sure to head over to Stupid Dumb Breast Cancer’s page to see a whole album of beautiful pictures from this event!

 


AnneMarieOtisAStupid Dumb Breast Cancer is my fierce and unconventional initiative to promote awareness and advocacy, with a special focus on how the disease impacts younger people. Bringing awareness to cancer in the late stages has become my prime focus followed by the after effects. It is time for a change. On behalf of my organization, I have been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception almost in 2012, Stupid Dumb Breast Cancer has raised and contributed over $270,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, Cancer Connects, and the Maureen’s Hope Foundation. I am currently serving as Community manager for wisdo.com and social media coordinator at LyfeBulb.

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25
May

Hepatitis Community Approaches Historic Landmark

It’s important that we stay up to date on all the causes our Patient Influencers are fighting for.

We have an amazing group of Hepatitis Influencers who we know are out there trying to forge ahead the best possible health care landscape for patients.

Patient Influencers like, Karen Hoyt, named a top 2015 Healthline Best Hepatitis C Blogger, Lucinda Porter, who’s written 2 Hepatitis C books, and Connie Welch, who was a HealtheVoices 2016 Patient Advisor.

Today we bring you a guest post from Raquel Peck, CEO of the World Hepatitis Alliance on some exciting news!

Elimination Of Global Killer Within Arm’s Reach

By Raquel Peck, CEO of the World Hepatitis Alliance

World Hepatitis Alliance _ Raquel Peck

A decade worth of advocacy efforts, awareness raising and highlighting the global impact of viral hepatitis could pay off this week as WHO Member States will make the most important decision on hepatitis to date.

At the 69th World Health Assembly in Geneva (23 – 28 May), 194 countries will decide whether to adopt the WHO’s first ever Global Health Sector Strategy for Viral Hepatitis (GHSS). The strategy represents a pivotal moment for viral hepatitis as it sets a goal of eliminating hepatitis B and C by 2030. To achieve elimination, the strategy outlines a set of prevention and treatment targets which, if reached, will reduce annual deaths by 65% and increase treatment to 80%, saving 7.1 million lives globally by 2030.

With vaccines and effective treatments for hepatitis B and a cure for hepatitis C now available, elimination of viral hepatitis is feasible and achievable. The only thing standing in our way is political commitment.

Viral hepatitis is one of the most significant public health threats of our lifetime, with 10 million new infections and 1.4 million deaths each year, globally. Despite this, the disease suffers from a remarkable lack of awareness and political priority. The adoption of such strategy should be a no-brainer (after all, we have vaccines and effective treatments for hepatitis B and a cure for hepatitis C making elimination possible) but greater political will and recognition are needed to scale up interventions.

Last year a key step was taken when governments of the world adopted the Sustainable Development Goals (SDGs), which included a target of combating viral hepatitis. Although this signaled a much needed commitment, hepatitis still remains hugely under-recognised compared to other disease areas and this is made clear in the SDGs, in which commitments were made to end HIV/AIDS, tuberculosis and malaria and merely combat hepatitis. In response, the hepatitis community convened at the World Hepatitis Summit 2015 and endorsed the Glasgow Declaration on Viral Hepatitis, calling on governments to develop and implement comprehensive national hepatitis plans to drive action toward the elimination of viral hepatitis.

We, the hepatitis community, must convene again as we approach a landmark moment in the history of viral hepatitis.

We are calling on governments to support the adoption of the strategy and its targets. If governments reject the strategy, they will be perpetuating the neglect hepatitis has been subject to for years and turning their backs on saving 7.1 million lives. They will also be ignoring one of the key commitments of the SDGs, which is that no one should be left behind, a commitment so apt for people living with viral hepatitis, many of whom are marginalised in one way or another. It’s time we properly address viral hepatitis and rid the world of these cancer causing agents that burden so many people, once and for all!

To find out more about the strategy, watch our animated video which also introduces NOhep, a global movement to eliminate viral hepatitis, to be launched at this year’s World Hepatitis Day (July 28)


World Hepatitis Alliance _ Raquel Peck HeadshotRaquel Peck is the CEO of the World Hepatitis Alliance (WHA), an international umbrella organisation of more than 230 hepatitis groups which she helped to establish in 2007 because viral hepatitis had been inexplicably neglected for so long. Before being appointed CEO, Raquel worked as the International Relations Director for WHA and was part seconded to the World Health Organization (WHO) after the Global Hepatitis Programme was established to help the team in Geneva with their communications strategy. Previously to this she was employed as a Public Relations Coordinator for the only UK national charity dedicated to hepatitis C – The Hepatitis C Trust. Follow her on Twitter @RaqPeck

24
May

WEGO Health’s Lemon Face For PCOS

Here it is folks, the tweet that started it all.

WEGO Health was challenged to show our lemon face for PCOS awareness and here at WEGO Health, we’re ALL about helping spread awareness.

What is #LemonFaceChallenge?

The #LemonFaceChallenge for #PCOS (polycystic ovary syndrome) is to raise awareness and funding to end the silence about this syndrome. PCOS affects one in ten women worldwide, but nobody is talking about it. Now, that’s a SOUR DEAL!!!

How do you participate in the#LemonFaceChallenge?

By biting into a lemon, and showing the world your lemon face, we’re showing that PCOS is a “sour deal” that needs immediate change. For all the details, check out Ashley’s PCOS Gurl blog, but here are the essential steps:

1. Cut a lemon wedge and bite into it

2. Take a pic/video biting lemon

3. Post to your timeline or feed

4. Challenge friends and family

So was WEGO Health up for the challenge?!

HECK YA WE WERE. We always are.

At a Monday morning meeting, a few of us decided to take the challenge and show the world our lemon faces! Here’s what ensued.

First, we took a nice pic with our lemons

LemonFace1

Second, we bit into those lemons!

LemonFace2

Then we all had some great reactions. . .

LemonFace3

Now that a few of us here at WEGO Health took the challenge, who’s up next?!

LemonFace5

Thank you for helping to spread awareness Ashley! Let’s change this sour situation for the millions of women out there afflicted by this syndrome.

Learn more about the project from PCOS Gurl’s Blog and make sure to sign up for the thunderclap campaign to help spread awareness.

SHOW US YOUR LEMON FACE!


JulieCerroneHeadshot

Julie Cerrone is the Patient Influencer Network Director at WEGO Health. Working with WEGO Health as a Patient Influencer prior to joining the WEGO Health team, Julie wakes up everyday motivated to help raise the patient voice. Follow Julie on Twitter, Facebook and on her personal blog.

 

 

 

 

9
Mar

Death of a Soldier: Honoring Sickle Cell Disease Health Activist Phyllis Zachery-Thomas

 

Here at WEGO Health we spend a lot of time talking to people with serious health conditions and the natural consequence of that is that sometimes, we lose friends and partners along the way.  This morning we got an email from the Sickle Cell Disease community letting us know that a long-time member of WEGO Health, Phyllis Zachery-Thomas, had passed away.  Phyllis wasn’t just the founder of the SCD Soldier Network; she was a passionate, energetic, and warm friend who inspired all of us with her work and her dedication to her community.  She was also one of the Health Activists that we’ve had the good fortune to meet in person; when Phyllis drove from Atlanta to Boston to attend our Health Activist meet-up in 2010, she became part of WEGO Health’s family forever.  It’s a sad day when you lose someone, but WEGO Health is honored to have spent time with Phyllis and to have been witness to her work.  Today, we want to honor her dedication to Health Activism and what Phyllis has brought to the Health Activist community:

 

  • founded the 501 (c)3 non-profit organization SCD Soldier Network, Inc., with the mission to support and mobilize the sickle cell community through the establishment of a national registry of volunteers and trained sickle cell advocates
  • received the Sickle Cell Disease Association of America’s 2010 Mary H Hunter Patient Advocate Award
  • used video to share her story and insights and raise awareness about sickle cell disease through the SCD Soldier Network Channel on YouTube and the Sickle Cell Disease Channel on WEGOHealth.tv
  • co-authored Sickle Cell Disease 100 Years Later, an account of patients and families dealing with sickle cell disease
  • connected with the online sickle cell disease community through her blog, Twitter, and Facebook pages
  • was an inspiration to countless new Sickle Cell Disease Health Activists looking for a way to get involved

 

Read about Phyllis in her own words through her WEGO Health Spotlight Interview and through her video presence.   Did Phyllis touch your life? Share your experiences and thoughts here and send your thoughts to the Sickle Cell Disease community.

 

11
Jul

The Benefits of Using Google+ as a Health Activist

It came to me as no surprise that many Health Activists are already on Google+ and braving the first portion of confusing adaptation to dig in an learn how they can latch on and really take advantage of possible opportunities therein. Health Activists are experts at communicating and often among the earliest of early adopters. We love social and we love sharing resources – enter Google+.

Here’s why I think Health Activists could really benefit from using G+ and a few changes or adjustments I’d like to see made to better enable their user experiences here.

Benefits of G+ for Health Activists:


  • Usability! Once you get over the arguably steep learning curve, G+ is easy to use. You can drag and drop, +1 (Google’s version of the Like), upload photos, videos, and comment on others’ posts in a snap. Everything is the same size and there aren’t awkward threaded boxes for you to figure out.
  • You can Edit. This is a huge one for me. There is no – “oh no I posted too fast – delete! Re-post” dance that many of us experience on Facebook. It’s maddening to catch a spelling error and be unable to fix it right away. Health Activists like to get things right and accurate – this is possible and easy.
  • Notifications are in your Gmail. Gmail is right there – many Health Activists email their community members and rely on long-form communication. Your Gmail and G+ communities are linked. That means only one tab needs to be open and you’re just a click away from re-engaging in a post conversation on G+.
  • Hangouts. I haven’t tried them yet, myself. But there is a huge potential here. For those Health Activists that are home due to chronic pain, fatigue, treatment regimens, or because they are caregivers or busy parents – this is a way to get face-to-face with up to 10 people in your community. Instead of the sometimes-awkward one-on-one Video Chat (you can still do that, though) – you can meet with a whole team of folks. Think of the possibilities: it’s the closest facsimile we’ve ever had to an in-person support group. Huge.
  • Circles – one for each “you.” In the past, many have written about the new way that Facebook Sign In has made it virtually impossible for you to keep your Health-you and you-you separate. As I’ve heard from many Health Activists, sometimes sharing personal health details is something you only want to do with your community members. Some Health Activists get more personal with their blog-readers than they do their own friends and family. With Facebook – it’s a complicated process to try to separate all the versions of conversations you want to have. G+ makes that a cinch. For those of us who have numerous Facebooks, Twitters, and blogs (myself included) this is an incredible step in the right direction. You can now decide who you’re sharing that clinical trial link, treatment news, or how you’re feeling with. And, conversely – you can keep the more personal pieces you may not want to share with your health community – relegated to your friends. This is possible on Facebook and Twitter but to create Groups or Lists there is a complicated search and add feature that involves lots of click and redirecting – G+ seems to be designed for finding people and dropping them into a Circle instantly. [Jump to keep reading!]
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