Category: Awareness Month

Here at WEGO Health, we’re always inspired by what Patient Influencers are doing out there in the world!

The following guest post is from Jackie Zimmerman, an avid IBD and MS activist. Along with 4 other awe-inspiring women, Jackie founded Girls With Guts, an organization to empower girls and women with Inflammatory Bowel Disease (Crohn’s Disease & ulcerative colitis) and ostomies to share their stories of confidence and to promote self-esteem.

Not only have they provided amazing resources and events for IBD females, but this year they’ve taken it one step further and stepped up to help light up the world for IBD Day.

Learn more about this feat from Jackie herself!

World IBD Day | Girls With Gut's Turns Niagra Falls Purple

May 19th is World IBD Day, the one day a year that all 5 million Inflammatory Bowel Disease (IBD) patients band together to raise awareness and gain support worldwide! This may not seem like a very big deal. Sure, lots of disease communities have important days throughout the year, right?

But this event is unique because this year there is a common goal among everyone in the IBD world; light up landmarks purple.

Purple is the color of the IBD awareness ribbon and the universal sign for IBD awareness, so it only makes sense to light up these landmarks in our community’s color.

Girls With Guts Summer 2015 Retreat

Girls With Guts Summer 2015 Retreat | Click the photo to learn more about the Girls With Guts Summer 2016 retreat.

I work for a non-profit called Girls With Guts, we support women living with IBD and ostomies, and we were approached by two of our clients with a great idea. Light up US landmarks. This was such a brilliant idea that I had never thought about, and as it turns out, no one else was really thinking about it either.

Various other countries around the world have been lighting up their landmarks for May 19th for years, but not America. It seems as though we’ve historically dropped the ball.

When we received that email from those clients with this idea, to help support this worldwide initiative, Girls With Guts jumped all over it. We were so excited.

Shockingly enough, it is relatively easy to apply to various landmarks to get them to support your cause, which makes it even more bizarre that it has never really happened here in America before. So Girls With Guts sent out a few applications for various US landmarks and after a few months of waiting we received a very exciting email. Niagara Falls would be supporting World IBD Day by lighting up the falls purple on May 19th! While this is a victory for Girls With Guts, this also feels like a giant victory for the IBD community worldwide. Not only are we getting awareness on World IBD Day but we’ve also now managed to join other IBD organizations around the world in solidarity for our cause. America is now on the map!

There is a strong sense of pride that goes along with knowing that Niagara Falls will glow a bright purple light on World IBD Day, as it represents all of the patients around the world who live with IBD.

On this one day, we can all step out of the shame and isolation associated with IBD, and know that our IBD family around the world is standing strong together. Knowing that this is a global effort makes it feel so much bigger, so much more important, and so much more meaningful. This year we only heard back from Niagara Falls, but next year we’ll be hitting the ground hard on other landmarks to get them to support our cause.

If you’re a patient involved in a disease community, I’d encourage you to reach out to national landmarks on your important days throughout the year.

Sometimes you will need an established organization to back you, but all that is really needed is the idea and the drive to get it done. In most cases there is no charge to you or your organization. It’s a very cost effective way to raise awareness for causes close to your heart!

You never know who you will reach and the lives you might change.



Jackie Zimmerman is an ulcerative colitis and multiple sclerosis patient and the founder and Executive Director of Girls With Guts. Since her diagnosis she has been an avid blogger and patient advocate working hard to empower patients and raise awareness. She spends her free time with her two dogs and playing roller derby.

Follow her on Facebook and on Twitter!

For those of you who didn’t tune in to yesterday’s fabulous #HAChat, the topic was “awareness.”  What does awareness mean to you and your community?  For many of Health Activists, spreading awareness is what made them open up about their disease. KatharineS84 said, “I’m excited for this topic because it’s the main reason I started opening up about living with #cysticfibrosis.”  However, in following yesterday’s conversation, it became clear that “awareness” doesn’t have a very clear definition. It takes on a different meaning depending not only on your perspective as a Health Activist, but also depending on your condition.  Awareness of diabetes will certainly differ from that of multiple myeloma, as will expectations of how aware others should be.  Some definitions from our chat yesterday included:

tmana “Awareness” means many things depending on context. We expect gr8er understanding from patients, activists, friends/family #hachat.

lizzmariposa To me, being aware of any health condition is a conscious decision we make to embrace knowledge, information, and the human factor. #hachat

ncrainbowgrrl T1: that there are actual people living with these conditions/ diseases and no, we don’t look any different…

kimmieCollas T1: recognizing that even if you don’t understand what we’re going thru, we ARE sick, not faking #HAchat

tmana T1. Also, that medical management technology is NOT synonymous with “cure”, and that costs incl physical, psych, social, and fiscal #hachat

So with so many different opinions and perspectives, how can we define such a broad concept? I’ve decided that awareness isn’t quite one thing, but a combination of many.  Here’s what I came up with:

Awareness isn’t quite understanding. According to @KatherineS84, “understanding comes with experience.”  Awareness is having a basic understanding of what a disease or condition is and how it affects the body and mind. It’s enlightenment and education.  It’s seeing past the condition and into the affected person.  It’s respect, empathy, and an openness and willingness to learn.  It’s a state of mind in others that makes you feel that you are not alone.

Awareness isn’t quite knowledge. If it was, then patients wouldn’t feel alienated or misunderstood by healthcare providers.  Doctors would understand pain and you wouldn’t be accused of faking. Patients would feel that they are heard and their experiences understood. If awareness was knowledge, then reading a text book would allow you to understand what it’s like to live with lupus, to survive cancer, to have diabetes. On your side, awareness is having the knowledge to understand what your doctor is saying, and to be an equal participant in your care. As NataliaElizabea said, “I think sometimes being aware goes hand and hand with being able to question the facts as they are presented read between the lines.”

Awareness isn’t the same for everyone. For some, it’s self-awareness, awareness of your condition and how it will come to affect your life. As KatharineS84 shared, “As a patient, I had to become aware myself before I could move forward. Denial can be a difficult hurdle, but it’s key.” And, similarly,  @ncrainbowgrrl noted, “I also need to make sure I take care of ME while helping to educate others.”

For others, awareness means support. It means your friend/family member/caregiver has the understanding and the respect to be there for you even if they don’t quite understand what you’re going through.

For communities, awareness is recognition, acknowledgement of a condition and the physical, emotional and economic implications it has on those if affects.  For some communities expectations will be high, but for niche communities they will be lower.

sanmees Awareness can vary by community- the awareness goals for an unknown condition will be different than one with a lot of coverage. #HAchat

KatharineS84 @susanmees So true! For #cysticfibrosis, goals start out basic due to lack of knowledge of most people. #hachat.

Not only will levels awareness differ between people, but awareness is knowing that not all patients are the same.

tmana Certainly important to recognize that in some silos, there is a wide range of effects on people-living-with, from mild to devastating #hachat

GermanInAlabama A huge part of awareness for me is recognizing that there are many facets to each story/condition. There is no one size fits all #HAchat

Awareness isn’t always a means to an end. Awareness isn’t always about raising money, though it can play an important role in attracting donations.  It’s not necessarily about reaching a goal, such as a number of people educated about your condition. Awareness goals will also depend on whether you’re a patient, caregiver, healthcare provider, or a Health Activist:

lizzmariposa I think awareness goals are ultimately spurring curiosity in people to learn more, seek more, question more, HUMANIZE illness more. #HAchat

wegohealth T4.1 As Health Activists, we can learn more about others’ conditions & bridge gaps. We can teach others what works re: awareness. #HAchat

wegohealth Humanizing a condition & presenting the narrative piece is a great way to make awareness “stick” & people to really care – I think. #HAchat

Awareness isn’t just a state of being. It’s a continuum. As kimmieCollas shared,  “Awareness is a spectrum – there is always something new to learn.”  It’s changing all the time depending on new drugs/treatments/test/procedures, and the especially by the way we can access information on the internet.  The level of awareness reached by each person will differ as well.  Some will stop at only a basic level, because as GermanInAlabama said, ” re:stopping at basic awareness: It’s easier. More comfortable because becoming more aware might mean becoming involved.” For others it will depend on their direct exposure to a condition.

Finally, why be aware?

bobutler T3: It’s bad enough to be suffering from something. It’s far worse to feel as though you’re suffering alone. #HAchat

Have any other thoughts or ideas of what awareness means? Share this post and start a conversation in your community.

See you at next week’s #HA Chat!


A new year means a bunch of new opportunities to raise awareness for health conditions and communities. There are numerous health observances and “awareness months/weeks/days” or events that seek to do a bunch of different things (raise consciousness, funding, share research, and reduce stigma – among others.) But let’s really look at the idea of “awareness” today.


From Wikipedia: “Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding.” Does this align with the way “awareness” is used in the media? In your community?


Where does awareness fit in with our Health Activism?


Join us for a discussion today where we discuss health observances, awareness campaigns, who awareness is for, and where it fits in with what we’re doing.

Can’t wait to hear what you have to say! See you on Twitter today at 3pm ET.


Invite your followers to join us! Here’s a tweet to use now:

What does “awareness” mean and who is it for? Join me at 3pm ET for today’s Health Activist Tweetchat: #HAchat

Earlier this month we wrote about 4 Health Awareness Events to Share in June, and we hope you joined us in sharing information about Men’s Health, Cancer, HIV and Sickle Cell Disease with your communities this month.

What you may not have known, however, is that June is also the month devoted to raising awareness about Migraine and Dystonia.  While you won’t find these events in the calendar of National Health Observances compiled by the Department of Health and Human Services, both Migraine and Dystonia affect the lives of many in our online communities. Health Activists in our community have dedicate time all year round to awareness for these conditions – and their efforts are truly influencing people within the Migraine community and Dystonia community and beyond by educating, reducing stigma, and sharing resources.

More Than Just a Headache, this year’s Migraine Awareness campaign (the first ever!), is devoted to raising awareness about the differences between Migraine and headaches.  To find out more details about how Migraines are different, visit the National Headache Foundation.  Help support your fellow Migraine Health Activists by supporting the More Than Just a Headache campaign – next time you encounter someone (online, or off!) who thinks Migraine attacks are just bad headaches, Teri Robert recommends reminding them that Migraine is “genetic neurological disease that has many implications.”  Be sure to read more of Teri’s recommendations for raising awareness on her Teri Robert’s blog.

While Dystonia may be less prevalent in your online communities than Migraine – there is an active Dystonia Group here on WEGO Health eager for the support of our community of Health Activists. Dystonia is a neurological movement disorder affecting an estimated 300,000 people in North America alone.  “It is the patients’ choice to be involved in their care as they know their dystonia symptoms the best.  Involvement and collaboration with their physicians is essential today and into the future,” recommends Health Activist Beka Serdans.  “Now is the time to get involved and become an “expert on your own dystonia” thereby increasing awareness of this disorder.” Beka encourages members of the Dystonia community online to explore websites like Focal Dystonia Exchange as well as Make Your Mark, to find new resources and information about Dystonia.  Health Activists from all communities can support Dystonia Awareness by signing the online petition to officially recognize Dystonia Awareness Month.

As always, thanks to all the incredible Health Activists working hard to raise awareness this month, and every month!



June is here and with it comes a collection of health observances that you can learn about and share with your community. Even if your community’s awareness month, week, or day falls on another part of the year – we hope you’ll join the WEGO Health Community in highlighting these health communities and the Health Activists that lead them!

First up is the fact that June is Men’s Health Month! This is a great opportunity for all health communities to zoom-in on how men are impacted by the condition or health focus in particular. It’s a good chance for us all to band together and encourage the men in our lives to be their healthiest and get involved in prevention, care, and best practices when it comes to daily health and more specific health conditions. Who are your favorite male Health Activists? Why not feature their work in your blog or community this month as a testament to the great work they are doing? As awesome Prostate Cancer Health Activist Darryl Mittledorf, LCSW, reminds us – this month it’s important that we keep in mind all of the men who are experiencing health concerns or conditions and may not be open and forthright with their experiences or have the support they need. Darryl says, “Gay men constitute approximately 7% of all cancer patients. And hardly more than 50% of all adult men are married. Men’s Health Month is a great time to remember that some men are facing health issues, isolated or alone, and can prosper with peer support.How will you incorporate men and men’s health issues into your community this month?

Later this month on the 19th is an important day not only here in the US but worldwide as World Sickle Cell Day draws near. Sickle Cell Disease is a condition that affects many around the world and your community may have more in common with the SCD community than you thought. Why not learn about SCD and share a bit about it with your community?  Health Activist and creator of Sickle Cell Warriors, Tosin Ola, tells us how important awareness is for those living with SCD, “This year the focus of Sickle Cell Warriors have been educating ourselves and then educating others. There are so many myths and misconceptions that surround sickle cell, and most of our discussions have revolved around debating and learning about these beliefs, where they come from, and if they are true or not.What does SCD have in common with your community and how will you share more about SCD on June 19th?

On June 27th is National HIV Testing Day. While amazing advances have been made in the HIV/AIDS community, testing is still incredibly important to benefiting from these advances. Raising awareness for this day is important. HIV Health Activist and Executive Director of Volunteer Positive, Carlton Rounds, stresses the very individual nature of living with HIV: “Everyone copes with living with HIV in different ways. How we feel about living with the virus, the circumstances of its transmission, the social stigma, the losses connected to the experience; physical, personal, economic, emotional, professional, psychological, spiritual, political, and intellectual varies greatly from person to person. Though we share a common experience, the way each of us processes it is unique.Will you discuss the importance of testing on the 27th?

And this Sunday, June 5th is National Cancer Survivor Daya “celebration of life.” Why not take the opportunity to reach out to those you know online (and offline) who are living with or have survived cancer and tell them how important they are to you? Remember their struggle and how difficult their journey has been and share in their powerful achievement with them. Ask a survivor how they would like to celebrate Sunday and join them! If you can, try to read and share articles from survivors that don’t sugar-coat (or pinkify) the experience of cancer but get to the heart of the cause and community. How will you discuss National Cancer Survivor Day and how could this day influence your own health community?

We hope you will join us in learning as much as you can about these conditions and the communities that work every day to raise awareness and improve the lives of their members. Supporting your fellow Health Activists is a great way to expand your reach and work together to do big things for the online health community in general. Tell us how you’re celebrating or commemorating this June and we will be sure to feature you and your work! Let us know what you’ve learned and how you’ve share with your community!

Click here to check out our 13 Ways to Get Involved This June and check out our full Press Release here

photo credit: rahego on flickr

Slacktivism (slacker + activism) is a topic we’ve discussed before in our community. Wikipedia tells us, “The word [Slacktivist] is usually considered a pejorative term that describes “feel-good” measures, in support of an issue or social cause, that have little or no practical effect other than to make the person doing it feel satisfaction. The acts tend to require minimal personal effort from the slacktivist.” Another version of it is called “clicktivism.” But, hey now, we are real activists and we click things! (And that word doesn’t even work because it doesn’t rhyme!)

___Alright, take out your pencils, we’ve got a thin line to draw. What’s the difference between slacktivism and effective awareness efforts? Is there one? Isn’t awareness, in any form, a step forward? Poise your pencil, we’ve got some analyzing to do.

___Firstly, awareness efforts encompass a whole range of actual activities. “Awareness,” itself, is vague:

a·ware [uh-wair] 1) having knowledge; conscious; cognizant. 2) informed; alert knowledgeable; sophisticated.

___I think we’d all agree the second definition is more what we’re talking about here. But awarenessneeds vary from condition to condition. Some health communities would be hard-pressed to find one person who doesn’t know what said condition is (*cough* pink *cough*) while other conditions are scarcely mentioned and others, still, extremely rare. Of course, no matter where a particular condition falls on the Awareness Spectrum – the personal experiences, the pain, the financial burden, the cumbersome treatment, the heartbreak, and the mourning of life before and reestablished of life after (or during) – are rarely the parts being broadcast. Because, no matter if you’ve disclosed to everyone in the world about what you live with – your health experiences are so personal they are practically rendered unknowable to those outside your community. But being aware doesn’t mean being an expert – to me, it means being moved to compassion through gained insight and facts.

___Maybe you’ve re-adjusted the awareness bar – happy to educate just one more person about your condition. Maybe you’ve re-adjusted to think BIG – hey, if football players can wear pink – maybe they can wear other colors too. Maybe the line we’re about to draw is a personal one – not a universal one. What do YOU consider an awesome awareness effort and what do you consider Slacktivism?

(Read on for a bird-mention, an 80s television reference, and my 6 things to remember about awareness efforts)

Continue reading →

Zombie Prevention Week

In honor of Brain Awareness Week (a week that aptly contains the birthday of famous brain Albert Einstein – whose own brain, apparently weighed roughly 500g less than the average adult brain.) I wanted to share with you the noble mission behind this week and take a few minutes to reflect upon how important neuroscience is. In the past few decades alone, significant advances in the field of neuroscience have been made. It’s no secret that our brains are the epicenters of our bodies and, really, our person-hood and lives – but we have a lot more to learn about them. The mission of Brain Awareness Week is to recognize and encourage the behind-the-scenes efforts of the scientific community to learn, research, discover, map, and further understand these grayish three-pound fat-masses we so greatly rely upon.

According to the Society for Neuroscience (SFN) (the awesome resource I am using to write this post), Brain Awareness Week (BAW) is “is an inspirational global campaign that unites those who share an interest in elevating public awareness about the progress and benefits of brain and nervous system research.” The goals of this week are to:

  • Inspire the next generation of scientists
  • Contribute to general understanding of basic brain functions
  • Improve public health by expanding awareness of neurological disorders
  • Make the connection between increased support for biomedical research and benefits to public health
  • All of which are awesome pursuits!

    The work of a neuroscientist is, as you’d expect, complicated. Our brains, complete with 100 billion nerves cells (think of all the stars in our galaxy – that’s the number of nerves you have in your brain), controls us in every way. Not only do they influence our actions like walking, talking, and using our senses – they help us function as emotional, rational, and social animals. The latter adds a level of complexity to neuroscientists’ work that is both fascinating and infinitely challenging. According to SFN, the motivation of these scientists are: 1) to understand human behavior better and 2) to discover ways to prevent or cure many devastating brain disorders. I decided to read through the SFN’s Brain Fact PDF to see just how neuroscience has influenced our different health communities. Just as our brains are central to our bodies, advances in brain science is central to the research of all of our individual health conditions. Read on to see what I mean. But, since, I get pretty wordy, you’re going to have to jump! (Think of it as an excited hop for your brain.) Continue reading →

    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 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

    Katie (@dearthyroid)

    In honor of January’s Thyroid Awareness Month, I had the awesome opportunity to interview Katie Schwartz, Health Activist mastermind behind the community Dear Thyroid™. Like her community, Katie is fiercely dedicated to being honest and real about life and thyroid conditions. Her responses to my questions are saturated with rich, fun language, likely due to her background as a comedy writer and fellow lover of words. In addition to being well-spoken, Katie takes a fresh approach to advocacy that is both light-hearted and content-centric. (Perhaps it’s no surprise why I’m such a fan!) Personally, I connected immediately with Dear Thyroid’s mission statement and their literary focus. It doesn’t take long to see why this community is special and why it has engaged so many. A self-proclaimed “pushy broad,” you can expect many more great things from Katie and her community in the future.

    Amanda: I’m so excited to be chatting with you today Katie! Thanks so much for taking the time out to share with our community.

    Katie Schwartz: Me too, Amanda! You’re passion and enthusiasm for health advocacy and is infectious. LOVE IT, GIRL. Thanks so much for your time and the opportunity to talk about Dear Thyroid™

    A: First off – tell us a little bit about your background and why you became an advocate for thyroid diseases and thyroid cancers.

    KS: I’m a comedy writer. Life, pre-sickness, was fantastic. I appreciated my life, family, friends, and valued time; mine and others. I knew who I was and where I came from. I didn’t need an internal or external makeover.  I didn’t need a disease to teach me anything. Suffice it to say, I don’t believe that we create disease or invite it into our lives. Disease just is. When it happens, life as you know it is forever changed, for yourself, your family and friends.

    Though I was diagnosed with Graves’ and Graves’ eye disease 4 years ago, I’ve had it for at least 10-years. Unbeknownst to me, it was genetic.

    Unfortunately, I almost died from thyrotoxicosis and thyroid psychoses. My mother and sister intervened to save my life.

    Upon diagnosis, I wrote scathing hate letters to my thyroid. I wondered if anyone wanted to write one too. One day, I launched a blog and invited other thyroid patients to write and submit letters to their thyroids. Within a few months, a brand, a website and a community were born.

    As letters poured in from patients and survivors; I realized that elements of my story kept reflecting back to me in various degrees. Multiple misdiagnoses, mistreatment and neglect were as normal as brushing your teeth in the morning. The more I read the more heartbroken and enraged I became. These exquisite, brave and wonderful women, men and young adults had rich, full lives that were ripped away from them without forewarning or consent. Their courage to keep fighting and sharing their stories was the impetus for my unwavering determination to be part of the movement that invokes change for thyroid patients. That and I am a pushy broad. So, I’m not giving up.

    A: What made you get involved in the first place?

    KS: I was frustrated. I wanted to know exactly what other patients were going through, in their words. I wanted the uninterrupted, uncensored grit. I didn’t want anything sugar coated. I was frustrated by the lack of spinning and spiraling. I thought, certainly others feel this way too, right? Anger seemed to be taboo. Not that anger is an aphrodisiac or anything; I just refused to believe that I was the only one who felt angry about my disease.

    Save religion and politics, anything goes on Dear Thyroid. This disease takes your mind to dangerous places and morphs your body into an unrecognizable stranger, to yourself and others. That brings up a lot of anger, frustration and sadness. We encourage everyone to write honestly. We want the good, the bad and the ugly.

    A: How has Dear Thyroid evolved to take that mission to the next level? What keeps you going?

    KS: As Dear Thyroid™ has grown, so have our goals. From a literary perspective, we receive poems, songs, rants, raves, love letters, hate letters, letters to doctors, and to and from families, among other literary works. Each piece is a gift, and treated with the utmost respect. Letters from families are as important as letters from patients. This disease impacts them as hard as it hits patients. In addition, we have ongoing columns about Graves’ disease, thyroid cancer, chronic illness, and a few more coming soon. We also giveaway Thyroid Awareness Bands, provide offline local support, family support and Wearing My Disease on My sleeve. Recently we launched a “Thymentor” program. We sell humorous T-shirts. (To be clear, we are in the process of becoming a non-profit and we do not accept any revenue.) We also partner with other organizations and groups to support their awareness endeavors.

    I am empowered and inspired every day by our community and their courage. They motivate me to do better, fight harder and challenge myself to think as far outside the box as possible, to make life better for all of us.

    As for the Dear Thyroid Team, I am VERY lucky to be working alongside such extraordinary, dedicated and talented individuals. Our team members donate their invaluable time, to write columns, support community members, and forge partnerships with other organizations. They donate their time—THAT’S AMAZING. They give so much of themselves to our community. I am in awe of them and have tremendous respect and gratitude for them. Each has such a unique point of view. With a pure heart and passion for their work, they bring it.

    Stay tuned for Part two of the interview with Katie where we discuss online activism, the highs and lows of online community, and the thyroid itself!

    Continue onto Part Two»