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

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Second, we bit into those lemons!

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Then we all had some great reactions. . .

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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!]
  • Continue reading

2
Mar

March HABC: I Disclose…

(This is a metaphor)

From one of my favorite websites, (dictionary.com):

dis·close [dih-sklohz] verb

1. to make known; reveal or uncover: to disclose a secret

2. to cause to appear; allow to be seen; lay open to view: In spring the violets disclose their fragrant petals.

The word “disclose” was first used right around the time of The Renaissance, an era of rebirth: artistic expression, intellectual transformation, and scientific advances. A time when people rose from the darkness of the past centuries and began opening themselves up to a new way of life. Now, whether this is a more romanticized version of what actually happened or not – the idea of a Renaissance from the Dark Ages fits perfectly with our March theme of Health Disclosure (and the upcoming first day of Spring!).

Once you open yourself up, share what you’re going through, and begin to connect with what’s going on around you – you are, in effect, being reborn. This, I would guess, is what many Health Activists felt the very first time they blogged about their condition, talked with fellow patients about common symptoms, or got that first “thank you, you’ve helped me so much” from a member of their communities.

For this month’s Health Activist Blog Carnival, let’s share our disclosure stories, our Health Activist Renaissance moments. Why did you first participate in a forum, support group, or blog? How did it feel to take ownership of your condition and begin to share with others? Was it a Renaissance of sorts or something less dramatic? How has your disclosure shaped your life since?

Write a post telling your disclosure story and why you would encourage others in your community to join you on the other side of disclosure. You could share how your online community helped you be more open, revealing more of yourself and your life. Or how your community has allowed a part of your to be seen, caused something to appear, or presented you open to view, perhaps? How has disclosing in your personal life influenced you?

Why not start with the completing the sentence “I disclose because…” or “I disclosed and…” see where the exercise takes you? If you’re feeling particularly like a spring violet – why not try a video entry this month? And, because we’re talking about the Renaissance so much – if you’re feeling particularly creative – you can make some form of art or poem that tells your disclosure story.

As always, once you’ve written, created, or recorded your entry – share with us! Either here in the comments section or as a link/upload in this discussion in the Health Bloggers Group. At the end of March we will highlight some of your stories and be a lot closer to our goal of creating valuable “disclosure” resources, tips, and advice for Health Activists.

Here’s our HABC graphic for you to add to your post if you’d like:

You were all so creative with February’s HABC – I can’t wait to see what you’ll come up with this month!

1
Mar

Do You Disclose? March is Health Disclosure Month!

photo credit bowery on flickr

To tell or not to tell – that is the question. If you’re living with a chronic condition, have health symptoms, or are undergoing treatment of any sort – disclosing that information to others has been a topic that’s crossed your mind. Who do I tell and how much do I say? When is the right time to bring this up? Is this TMI? Will this change how people think of me? Will talking about my condition influence my work life, love life, and family life? How can I share what I’m going through with people I care about without worrying them? How do I ask for what I need?

This topic proposes so many tough questions it can be overwhelming. But fear not – these are the questions Health Activists and empowered patients have already run into. A topic that Health Activists truly have the best, most valuable perspective on (in my opinion!). If you’ve been a patient and now lead or participate in a health community – you have important things to say. It’s our hope that you will take this month to share those answers, stories, and experiences that helped you decide to tell or not to tell.

Is your health-cat out of the bag? Is your health-cat still waiting for the right time to come out? Would you rather keep it at home safe and sound? We’ll talk about all aspects of disclosure this month and give you lots of blog-fodder and conversation starters for your community.

Already written (or vlogged) on this topic? Now’s the chance to share what you’ve said in the past and repurpose that content to inspire other Health Activists. Got tips for what to do and what not to do? We want to collect all of your pros and cons and create resources for other Health Activists of the past, present, and future. We’ll need your help, but we know you’ll be great!

Join us – make March your Health Disclosure Month too! If you’ve been waiting to come out about your health condition – now might be a good time to do that (once you get some tips from Health Activists, perhaps?). We hope that no matter where you are with disclosure, you’ll share that important, challenging journey with us and with your communities so your experience can help others. And as always – be sure to check back here all month for new ideas, posts, and activities to get your disclosure story out in the open or safely tucked away until you’re ready.

25
Feb

February Poll Results: How You Feel About Your Condition & Relationships

Earlier this month, we asked you to think about how your condition influences your relationships and how you really feel about that. We received a lot of responses – making me realize just how important this topic is to Health Activists. The challenge of relationships is, go figure, not made any easier by adding the challenge of living with a chronic health condition.

Let’s take a peak at the results and see how people voted:

How you feel about dealing with your chronic condition and relationships. (Click to enlarge)

As you can see, the top results demonstrate that struggle that I mentioned back when I explained our February Theme. Conflict! The inherent difficulty that comes with having a good relationship is possibly made even more difficult by adding a chronic condition to the mix. The work involved in balancing, handling, and understanding both at once isn’t easy either. The number one response to our poll question was that you feel “Burdened; sometimes it’s a lot of weight to carry. The second most popular response was “Conflicted, there is so much going on.” Particularly for those waiting for diagnosis confirmation, new treatments, and the daily regimen involved with managing chronic conditions (or pain) – being overwhelmed by everything makes sense. Sometimes when a lot is happening, the hardest part is focusing on one thing and being decisive. But, at least, our third most popular response is slightly more optimistic, making light of the hand we’ve been dealt, feeling “Like being entrusted with an epic quest; this is a challenge.”

What I found most interesting were the write-ins for our “Other” option. Here are a few comments that people shared:

“Bored! I get tired of explaining and people not get it.”

“Frustrated. No end in sight!”

“Apprehensive, because I don’t know how someone new will respond.”

“I feel positive thinking is the only way to battle and overcome this problem!”

“Nobody gets it and that’s ok.”

Do you agree with these comments?

This has been an important exercise – but we can’t end on a note of uncertainty or stay in that state of conflict. So let’s look at what we have here. An opportunity to pause and see there is common ground here, across conditions. The list of chronic conditions is long and diverse, and yet, this poll shows that people of different conditions feel pretty similarly. As commenter Jay said, we “need to add “All of the above” as, at some point, I’m sure everyone feels every one of the options.

Something I’ve heard Health Activists say is that they are relieved, blessed, glad to have their communities because finally they know (and feel) that they are not alone. They, now, know people who really get it, who understand. And, with the internet, they now have access to these other people who can relate. The online space has truly offered something wonderful for those who may live with a rare condition, may live far from in-person support groups, or may not be able to leave home. That’s huge. It is why support networks, health blogs, and forums have become so popular. And while you may not need one more relationship to add to your lives – the relationship between you and your community is an especially unique and beneficial one to nurture.

Why not bring back this topic to your community and see what others think? Sometimes putting feelings into words (or quirky analogies) alleviates them. What do you think your community would select as their most prevalent feeling toward dealing with their condition and relationships? Join the discussion here!

17
Feb

One Small Step for Social Media Junkies, One Giant Step for Pharma-kind

I’d planned to fold my hands and participate only with my eyes and mind during Pharma’s first foray into the world of the mysterious, often untamed Twitter chat (#Rxsave). But after @AstraZenecaUS’s first question: “What is best way to increase awareness of prescription savings programs?” – how could I not jump in?

A pervading answer to this important question was – educate those who reach patients: patient advocates, e-patients, and Health Activists! In order to do this, of course, Pharma must commit to presenting Health Activists with helpful boundaries: what they can and cannot say, what language to use, and be crystal clear about the message they want to communicate.

While many Health Activists are of the non-conformist sort (free-thinkers who have strong opinions they will most definitely share!) – they are also fiercely dedicated to helping others in any way they can. That is why I know they would abide by any of these to-be-established boundaries that Pharma would hypothetically construct (with some inevitable hand-binding by the FDA). I know Health Activists who cannot wait to share even the most minute “a-ha” moment they come to when finally seeking insight into the labyrinthian world of Pharma and regulations. Trust me, you can trust them.

As Phil (@PhilBaumann) mentioned in his important blog post, “But in future chats, the message of the chat shouldn’t be Social MediaThe message should be the person who needs to be heard.” Phil is completely correct – social media junkies are great – but we need to get the people who will benefit from the actual prescription savings (and education about adherence, etc) to have a voice. Those who could really use the prescription savings AZ is working to promote. But as my colleague Mandy (@mandylipka) mentioned, “We have to start with the power social media users, the patient advocates and activists, and this will buy Pharma time to get its act together. Pharma is the youngest in this space but is the one that hopefully will benefit the most. But we are not there yet.”

A question that stuck out to me was “How can we reach people who do not use social media, who are of older or less affluent demographics?” How can Pharma get through to them about these new savings programs (or any other messages they need to send)? My unelaborate answer to that is: mobile (apps and text messages) and print for doctor’s offices and support groups. An idea that I loved, is to educate caregivers – they are “the sandwich generation” (quote by @ncoaging). Caregivers are able to educate both the older and younger generations that they care for. @Noaging suggested reaching caregivers through employer benefit programs.

And we can’t yet discount those old dusty boxes, our televisions. With television ads comes the need to speak in a language lots of people can understand. Health literacy advocates had a soft, but integral perspective to add last night. Pharma must consider those who cannot comprehend their jargon but who could truly use those Rx savings. This can be accomplished, again, through awareness and education.

And this is where I started my post. Health Activists! Harbingers of those two principles and bastions of passion for helping others. Smart, early-adopters who may know their way around a hashtag or two but still foster the good old-fashioned desire to help others. A desire that won’t be silenced – despite even the most complex ISIs (Important Safety Information) and regulatory restrictions.

I commend AstraZeneca – someone has to “go first.” And, (I’m repurposing one of my favorite quotes from Health Activist Wheelchair Kamikaze) we cannot forget that the FDA still has Pharma “by the naughty bits.” As commenters on the ePharma conference said – we’re all waiting impatiently (and, honestly, with a bit of that “air out of tires” sound – whoooosh of disappointment) for their “ruling” on where Pharma can go from here.

Lastly – a shout-out to my friend Alicia Staley for, basically single-handedly moderating and leading us all in the #Rxsave chat. She somehow kept up in real time, Retweeted all of @AstraZenecaUS’s questions, and offered brilliant points of her own as a cancer survivor and Health Activist.

But what do you think? What is your take on the #Rxsave chat and, maybe more importantly, Pharma’s foray into social media? How can Health Activists educate their communities about prescriptions?

(Check out the whole chat transcript here if you want to catch all the great discussion)

14
Jan

Interviewing Health Activists: Katie Schwartz, Founder of Dear Thyroid™ Part 2

Here is Part Two of my interview with Katie Schwartz, founder of Dear Thyroid. (Click here to read Part One)

Katie (@dearthyroid)

Amanda: Dear Thyroid is a different kind of health community and it says so right in the first line of the About page. What made you decide to bring your crusade online?

Katie Schwartz: Being a writer, I have an ongoing love affair with words. I believe that each person (when they are ready) must tell their story in their own words. Our slogan is “Healing our thyroids one letter at a time”. We mean that literally and metaphorically. Write and submit as many letters as it takes. Join our conversations in comments, and on our chat boards.

If we don’t tell our stories, we are doing our respective diseases a huge disservice. We learn from each other. (By we, I mean the collective we.) We tell the medical community what’s not working. We bridge the gap between families and patients. We experience a degree of healing through the realization that someone else has gone through exactly what we have.

To quote Joanna Isbill “Dear Thyroid™ is changing the way we talk about thyroid disease and cancer. We are starting a new conversation using YOUR words.”

Words are the key to all doors, in my opinion. Our community has written hundreds of thousands of powerful words, humorously, irreverently, angrily, sadly and happily.  And always, always honestly.

A: What inspired you to create this unique community?

KS: Providing a literary outlet for our community to come together, and write their story on their terms, in as many ways as they wish. That and a desperate, burning passion for change. We deserve better. Too many doctors treat thyroid disease like a ‘no brainer’, akin to the flu.  We empower each other, to become our own patient advocates, to change the way we communicate with our doctors, our families, our friends and each other. We have guest bloggers, some are doctors, others are health advocates, or nutrition experts.

@BigGirlFeats said the best thing I’ve heard in a long time regarding thyroid cancer “That it’s an “easy” cancer it’s the best kind!” She went on to say “Ok, than YOU take it for me!!”

How dare any doctor tell patients how lucky they are to have this fabulous cancer?! Package it in a Tiffany box; Cancer is cancer, is cancer. Period!

Too many doctors marginalize thyroid autoimmune diseases. They barely explain what it is or what it does. Few of us walk out of the doctor’s office knowing what a thyroid is, even AFTER diagnosis! If left untreated or mistreated, this disease can kill you. Over 59MM people have a thyroid condition and over 20MM don’t know it. This is a pandemic issue with little funding, awareness or education. Most people don’t know where their thyroid is located, much less the power it has over a person’s mind and body. Become your own patient advocate. We provide a lot of resources.

As a few of our community members said: “Treat the patient, not the chart!” (Jill) “Why must I fight for normality?” (Amy). “Thyroid disease leads to brain drain” (Bonnie). “Wading through this crap to live!” (Linda).

That and more inspires the drive to do more, more, more.

A: What has been your proudest moment as a health activist?

KS: There have been so many. One that I recall off the top of my head was with a woman who wanted support, but wasn’t ready to write a letter. I asked her if she’d be comfortable emailing with me. She was. Over the course of a few months, on her own, she submitted a letter. I was so proud of her because I knew what a challenge it was for her to share that letter. We chatted during the entire process, from the moment it was published and while she was receiving comments. At the end of the day, she said “I found my voice.” She added that she’d never felt the level of support that she received from our community and how indescribable the experience was. She doesn’t know this, but I sobbed tears of joy for her.

A: The most challenging one?

KS: In the beginning a few folks took umbrage with the uncensored language, lack of religion and pin-ups that we pair with each literary piece. My goal was to engage, and make sure they understood why I made those choices for the brand, not to change their minds. I wanted them to feel heard because I did hear them. What was so great was that a few of those folks ultimately became community members. They understood, on a very deep level why Dear Thyroid was different and how that difference might be of value to them.

A: What do you wish the general public knew about the thyroid and thyroid conditions?

KS: Thyroid conditions are not an excuse to be fat! Conversely, people who look anorectic might have a thyroid condition. Stop assuming. Thyroid diseases and thyroid cancers are very serious health issues, psychiatrically and physically. Thyroid disease and thyroid cancer can kill you. Treat people the way you want to be treated. Don’t judge and don’t mock a disease you know nothing about. Think about what you want to say before saying it.

PLEASE check your neck. Request a full thyroid function blood panel. Look up the symptoms of thyroid diseases and thyroid cancers, and if you think you have a thyroid condition, run like a dog to an endocrinologist. Oh, and for those who think this is an easy fix or an inexpensive disease to treat. WRONG. This disease is very costly.

A: What do you do when you’re not advocating?

KS: Writing, rinse and repeat. I’m also reinventing myself. Reading – I’m a Beat Literature junky. Collecting – vintage tchotchkes and perfumes. Rebuilding – relationships. Adding new cards to my “Guilt Rolodex” and maintaining a high level of neuroses.

It’s a brand new year, what is in store for the future Dear Thyroid and thyroid awareness overall? We are SO EXCITED ABOUT THIS YEAR! All caps and an exclamation point, word! New partnerships are in the mix, becoming a fully fledged non-profit, launching our family outreach and support program, and doing everything we can to continue our unique approach to awareness, education and support.

Thank you so much for taking the time to interview Dear Thyroid. We very much appreciate WeGoHealth.com and the good work you do.

Special thanks to Katie for sharing her story with me. I eagerly await more of her impending advocacy endeavors and hope to be able to feature more of her and her community’s work on the blog!

Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now:

Visit Dear Thyroid™ and see the Dear Thyroid profile on WEGO Health

Follow Dear Thyroid and Katie on Twitter

“Like” Dear Thyroid on Facebook

Check out Katie’s new Awareness campaign “I am The Face of Thyroid Disease” that she created with Mary Shomon (@ThyroidMary and http://thyroid.about.com)