Posts tagged ‘interview’

February 7th, 2012

Interviewing Health Activists: Isabelle Ouimette on Congenital Heart Defects

by Caitlin

Valentine’s Day is fast approaching, and with it, and influx of pink and red heart decorations.  While we hope they remind you of someone you love, WEGO Health can’t also help but hope that they get you thinking about your own heart health.  This Valentine’s season, WEGO Health is promoting awareness of a lesser known heart problem, Congenital Heart Defects (CHD).

Did you know that Congenital Heart Defects (CHD) are the #1 birth defect worldwide?  And though nearly twice as many children in the US die from CHD than all forms of childhood cancers combined, funding for CHD research is dramatically lower.  Isabelle Ouimette, the Chapter Director of It’s My Heart, took some time to share her experience as CHD Health Activist and what inspires her about her community.

WEGO Health: Can you tell us a little bit about your background and why you became an advocate for the CHD community? What made you get involved in the first place?

Isabelle: I was 24 weeks into my pregnancy when I received a phone call from my OB/GYN that there was something not quite right with my baby’s heart, his right side of the heart was enlarged. It was one of the most devastating days of my life thinking what I could have done to prevent this. The next thing I knew was that I was heading to a Boston hospital twice a week from ultrasounds and fetal echocardiograms. Two weeks after the initial shock, I realized that life with my new born son would not be what I had once imagined and I didn’t know how I would deal with so many unknowns.  My son, Andre, was born in May 2008 weighing a 8 ¼ lb and looked like a healthy baby boy but only for a few minutes. He had to be rushed to the NICU because he was lacking of oxygen very fast. It was then that the final diagnosis came in; he was born with critical pulmonary stenosis, dysplastic tricuspid valve and an enlarged right atrium. His journey was far from over. He was too little for a treatment to be admitted therefore we were in a wait-and see mode for the next 6 weeks of his life, with a trip into Boston for a weekly echocardiogram. At 6 weeks old, our family was told that Andre might not survive but they will do their best to save him. What should have taken 3 hours took 6, and it felt like a lifetime. This heart procedure was followed by his first open-heart surgery at 3 months old. His prognosis since then is as good as it can be today, we are learning to live each day at a time in between the 6 months cardiologist follow-up appointments. That is part of our new normal life.

I wanted to get involved to be of support for those going through this journey because it was extremely hard to have to gone through this alone.

 

WEGO Health: What made you decide to bring your crusade online and get involved with It’s My Heart?

Isabelle: A few months after my son’s surgery I felt that more needed to be done in the CHD community because I was yet to have met anyone else that went through a similar journey besides the families we met within the hospital. My first experience connecting with families online was on a CHD community group at Babycenter.com. There, I used to spend hours sharing words of support and learning from others going through this journey. It also allowed me to connect with families in person who would fly into Boston for life-threatening surgeries to have their little ones. Offline, I felt that there was not enough support for families inside the hospitals we visited.  I eventually came across a Houston-based national non-profit organization called It’s My Heart (IMH) http://www.itsmyheart.org, supporting and advocating those affected by Congenital Heart Defect. It was started by a mom whose son had to have a heart transplant and sadly lost his battle at 2 ½ years old. Had his condition been detected earlier, he could have had a better chance at survival. She also found there was not enough resources and support for those going through these terrifying times therefore the foundation of the organization. It was exactly what I was seeking to fulfill with my wish to do more for others going through this traumatic journey. In 2010, I was given the opportunity to become the Boston Chapter President of It’s My Heart. In August 2011 I became the Chapter Director of the national organization now helping to setup and support local chapters across the country.

 

WEGO Health: What’s the best part about leading your online community?

Isabelle: The best part is that this online community is a great tool for communication and for engaging conversation about various topics revolving CHD. It also allows pertinent information reach its target audience more quickly and effectively. It also helps with raising awareness for the No.1 Birth Defect in America, CHD, when no one is talking much offline.

 

WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?

Isabelle: My proudest moment was when I held my first It’s My Heart CHD awareness walk in 2011. It was a lot of work to organize such an event but it was all worth it. The most challenging was raising awareness for a cause that no one really talks about; it’s not like cancer which gets a lot of attention because of the awareness set forth over the years. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. It is still an uphill battle but l believe that consistency along with social media will help CHD save more lives followed by more funding greatly needed for ongoing research.

 

WEGO Health: Is there anything you wish the general public knew about Congenital Heart Defects?

Isabelle: I wish the general public would realize how critical it is to have CHD diagnosed early. Early diagnosis means that treatment can be more effective therefore the survival rate. Too many babies are going home without being properly diagnosed. Too many kids in our schools are not being screened for CHD before it is too late. Too many athletes, sportspeople are in the same situation. There is a small non-invasive device called the Pulse Oxymeter (Pulse Ox) that all doctors’ offices and hospitals have and is not used often enough. It monitors the oxygen saturation in the blood and can detect most heart defects. It is a small device. The cost of not knowing is a lot more.

WEGO Health: How do you raise awareness? What can others do to get involved?

Isabelle: IMH CHD Awareness brochures, online presence on Facebook and Twitter, monthly newsletters, as well as blogging at learnaboutchd.blogspot.com. Others can also get involved by becoming an IMH representative of their community by setting up their own local IMH chapter.

 

WEGO Health: What next for your community? Where do you see the conversation about CHD headed?

Isabelle: The next thing for the CHD community is to legislate the use of the Pulse Ox in all US States. It can be a lengthy process there are a lot of very dedicated parents who are making big strides in their own state. The hope is to see Pulse Ox become the standard right from birth and in all areas where it should be used for prevent unnecessary tragedy. The groups I also follow online about this work are Pulse Ox Advocacy – http://pulseoxadvocacy.com/ ;  1in100 – http://www.1in100.org; Newborn CHD Coalition – http://newborncoalition.com/

 

WEGO Health: What do you do when you’re not advocating?

Isabelle: When I am not advocating, I find myself researching on other ways to support and empower families affected by CHD. When I am offline, I love spending time with my family, and homeschooling my 3 year old miracle son who reminds me that every day is such a blessing because he could have easily not been with us today. It is thanks to advanced research, medical talents and early detection of CHD that he is able to be a typical 3 year old today.

Thanks so much to Isabelle for her insight and for her work. Congenital Heart Defect Week is from February 7th – 14th; you can check out It’s My Heart and the great work they do by visiting their website www.itsmyheart.org.


 

 

 


 

September 8th, 2011

Interviewing Health Activists: Marla Murasko, Special Mom Entrepreneur

by Amanda

Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.


WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?

Marla: I have always been involved in the special needs community even way back to my high school years.  I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions.  So my passion for helping children with special needs started a long time ago.

However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart.  Now it was my son who I was advocating for, so it got more personal for me.

WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?

Marla: My health activism truly began the day my son was born.  When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis.   We declined that test for personal beliefs.  However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born.  Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief.  Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate.  What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say.  That’s normal, that’s part of the grieving process.  But that the greatest gift you can give your child is to advocate, educate and take part in their lives.  You are going to be their voice.  So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc.  The more informed you are, you can make better decisions with regards to the care of your child.

WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?

Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed.  Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey.  I did a lot of research as I documented different medical terms, associations, etc.  My only advice about writing a book is be patient and passionate about what you are writing about.  It may take a while to finish it may not, but you want it to be genuine.

WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?

Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed.  As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information.  But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both.   However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective.  So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.

WEGO Health: What made you take your crusade online? What’s the best part about leading your community?

Marla: The best communities are online.  You don’t have to be local to other mothers to find a common bond.  You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.

I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.

WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?

Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.

My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.

WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?

Marla: That we are parents also, we just may have a few more struggles than most.  Engage us, engage our children.  The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.

WEGO Health: How do you raise awareness? What can others do to get involved?

Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board.  Just get involved with something you are passionate about.

WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?

Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.

I envision providing workshops, seminars, and creating an online quarterly magazine.

WEGO Health: What do you do when you’re not advocating?

Marla: Besides run my businesses, I enjoy my family.  Spending time with them is extremely important to me, creating memorable moments is what it’s all about.

Thanks so much for sharing Marla!

Be sure to check out Marla’s work around the web:

http://marlamurasko.com/

http://specialmompreneurs.com/

http://www.facebook.com/specialmoms

http://www.twitter.com/specialmoms

 

May 6th, 2011

Interviewing Health Activists: Ashley Rose, Blogger & Winner of HAWMC

by Amanda

Today I’m honored to present an interview with our HAWMC Winner Ashley Rose, blogger at Tales of SWAGing. Though she was chosen at random from our Top Contributors, I’m really glad she was because she has a lot of fun thoughts to share with us and some pretty entertaining blog posts all HAWMC-long. Ashley is a dedicated Diabetes Health Activist and PWD blogger and also working on starting her doctorate program. It was wonderful to get to know more about the blogger behind the blog and I hope you enjoy it as much as I did…


Amanda: Congratulations on winning our Health Activist Writer’s Month Challenge (HAWMC) and being such an active contributor to the challenge all month long. I’m so excited to be chatting with you today, Ashley! Thanks so much for taking the time out to share with our community. Can you tell us a little bit about your background and why you became a blogger and advocate?  What made you get involved in the first place?

Ashley: My writing background is random at best. In high school I fancied myself a poet; I wrote for a “zine” and had my own website. I’ve also kept a journal since the summer before college but I never thought I’d be a blogger. SWAG was a class assignment and I planned to delete it after the semester was over. However, the end of the semester coincided with the first annual Diabetes Blog Week and I decided to give it a shot. I knew blogging that week would either help me take ownership of SWAG or realize that blogging wasn’t for me. That week really opened my eyes to my own feelings about having diabetes and I learned so much about everyone who took part in it. It wasn’t until months later when I got a tweet from someone in response to a post that said “thank you for saying what I couldn’t” that I realized what I was doing could be considered advocating. I knew then that even if it felt as though I was talking to myself most of the time, my words could have meaning to someone else.

A: Your blog, Tales of SWAGing encompasses the phrase “Scientific Wild Ass Guessing” (SWAG) – tell us a bit about that and how it drives your blog.

Ashley: I can’t take credit for the title; it was Ashley’s (uhm, a different Ashley than yours truly) idea. It comes from the Diabetes Term of Endearment “SWAG Bolus.” There’s a lot of science involved but at the end of the day, diabetes management still utilizes a lot of instinct. I think the title speaks to the fact that I don’t take myself too seriously, and I certainly don’t pretend to have all of this diabetes stuff figured out.

A:  What is your favorite thing to write about?

Ashley: I always enjoy writing about good news or reasons for celebration but I like writing the most when it’s part of something like HAWMC. I learn so much about fellow bloggers when we’re discussing the same topic or writing within the same parameters. Just the tone that someone chooses when writing about a topic says so much about them and their approach to their health (side note: Psych major in the house).

A: What is the toughest thing to write about and how do you decide whether or not to write about it anyway?

Ashley: My general rule is that the posts that are the hardest for me to write are the ones that most need to be written. It’s always hard to write about problems I’m having with my diabetes management. It’s hard to admit when I’m having a difficult time and feel as though I’m suffocating under the weight of it all. That’s when the support of the community is the most crucial and the Diabetes Online Community never disappoints. It may take me longer to actually write the posts that are the most difficult but in the end I’m always glad and relieved that I did.

A:  What do you wish the general public knew about your condition?

Ashley: I think my biggest wish is that TV doctors and some publications would just stop talking about diabetes altogether because most of the information they give does more harm than good and I really wish they would stop using diabetes as a threat. I wish the general public realized that the word “cure” is thrown around haphazardly when it comes to diabetes. There is no biological cure and every time that word is thrown around I feel it negatively impacts the support of diabetes research by the general public. I also wish that the public realized just how serious all forms of diabetes are despite their invisibility and just how many of them either know someone with diabetes or will themselves become a PWD.

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

Ashley: When I’m not blogging, I’m a student getting ready to start my doctorate program. I’m also a gym rat and a lover of all things shiny.

A: It’s a brand new month, do you have any ideas for what you’re going to blog about in the future? How do you decide what to write about?

Ashley: This month I’m taking part in Diabetes Blog Week. I also plan to tackle the HAWMC wrap-up post and the DSMA Blog Carnival topic. I have my 3rd Diaversary and my quarterly endocrinologist appointment this month so I’ll be writing about those, too. Generally speaking, if there’s something to celebrate, own up to, or something in the world of diabetes that’s making me angry (ie: diabetes myths), I blog about it.

A: What upcoming projects or links would you like to share with our community so more folks can connect with you and check out your work?

Ashley: Aside from Diabetes Blog Week and other posts that I have planned, you can always find me taking part in Diabetes Social Media Advocacy (DSMA) on twitter Wednesday nights at 9pm EST.

Thanks Ashley! It was great to get to know you during HAWMC and to have connected over blogging! We hope you’ll continue to share your work with our community and keep doing what you do!

If you haven’t yet, be sure to:

Check out Ashley’s Blog “Tales of SWAGing”

And Follow Ashley on Twitter!

 

January 14th, 2011

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

by Amanda

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)


January 14th, 2011

Interviewing Health Activists: Katie Schwartz, Founder of Dear Thyroid™ Part 1

by Amanda

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 WEGOHealth.com 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»