The Faces of Breast Cancer

It’s October and of course that means it’s time for the pinkification of the country.  Everywhere you turn there are pink ribbons and all the controversy that goes along with them.  Rather than indulge myself in the ongoing frustration about turning a disease like breast cancer into a pink fantasy world, what I’d prefer to write about are my friends who’ve gone through breast cancer, to honor them instead of honoring the pink ribbon marketing campaigns that are in our face everywhere this month.

Back when I was a marketing executive in corporate America, I ran one of those breast cancer awareness campaigns for my previous employer.  I know how it works.  We could only fund the 6 figure annual sponsorship fees associated with the campaign if we could prove to the corporation that we would see substantial incremental sales volume from the program.  It’s not all out of the goodness of corporate America’s heart, guys.  Five Hour Energy drink isn’t helping save women’s lives, it’s using breast cancer and pink ribbons to sell energy drinks that have no intrinsic value to your health, let’s be real about this, folks.

When I think of breast cancer, I don’t think of the color pink, or of ribbons, or all the products I see on the shelf and in the store circulars with pink ribbons.  I think of the faces of the women I know who have had breast cancer.

To date, eight of my very close friends have gone through breast cancer and a few have already gone through recurrences.  Some of them were friends before I was diagnosed, all of them have become even closer friends after diagnosis.

There’s an immediate connection that is formed when someone you know is diagnosed breast cancer.  You quickly bond and share stories about your diagnostic treatments and procedures, and nod heads when the other one tells you about her difficult reaction to her chemo treatment, or how her breast literally became so red and burned with the radiation she received that she couldn’t wear anything against her skin for months, or how her surgical scars got hard and thick with keloids and she worried about how it had changed her body, or how she’s having severe joint pain from the Arimidex or Tamoxifen she’s taking, or her fears that our daughters will someday have to go through what we went through.

With some, there are the unspoken words and nervous looks you share when you both hear of someone new who’s been diagnosed, which sparks your fears of recurrence.

But with each of them, I’m most amazed by the strength and courage I see in them.  They’re women, they just keep doing what women do. Even while they’re going through treatments, procedures and surgeries, they keep being the mom, the one who takes care of the kids, and who runs the household.

Many of these strong women kept working right through their treatments; they went through the hair loss, got through the endless hours of toxins being poured through their bodies, the drips, the constant doctor’s appointments, the often barbaric diagnostic procedures.  They let their bodies be poked and cut, they got cat scans and pet scans where their bodies were filled with radioactive materials and they laughed about whether they were going to start to glow green after all the chemicals coursing through their bodies.

They don’t really complain.  They say things like, “Oh, it’s a tough one this time,” when they’re talking about their latest chemo session.  Or, “I’m feeling kind of nauseous this treatment,” such an understatement.  Kind of nauseous?  Try constant nausea for weeks and months.  But these women are resilient.

They laugh a lot.  They have a lot of joy and energy and gumption, these women.  They compare breast surgeons, oncologists, and the handsome plastic surgeon who worked miracles on their reconstructed breasts.  They laugh and complain with me about the crazy hot flashes and the weird OBGYN procedures some of us now have to go through while on Tamoxifen and the strange new breasts we have.

Oh, I’m sure each one of them has had their moments, often, when they just let it all go and cried and were scared.  But that’s not what I see when I see them out and about, or when I see them with their kids and at school or the after school sports.  I see them being strong women, trying as hard as they can to just keep a semblance of a normal life while they’re going through one of the most frightening times of their lives.

These are tough women.  And if you saw them, you’d never know what they’d gone through.  They look, on the outside, like all of us: just 8 great women with families, jobs, busy lives.  But inside each one has a quiet strength, resilience and courage.

So this month, when you see all the pink and the ribbons and the products hawking awareness, maybe you’ll take a moment and consider donating your time and money towards breast cancer research instead of just breast cancer awareness.  Because all the awareness in the world isn’t going to end this disease.  The only way to end it is to find a cure.


claudia-106Claudia Schmidt, a working mom with two teens, writes a blog about life after her breast cancer experience in February of 2010.  You can follow her at My Left Breast.  Claudia’s work has been featured on WEGO Health, Cancer Knowledge Network, BA50 and Midlife Boulevard.  She lives in bucolic Clinton, New Jersey with her husband, two teens, and a menagerie of pets.  Follow her on Twitter @claudoo, Facebook or Pinterest.




Buried or Birth?

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

Buried or Birth?

By: Sharon Coyle-Saeed


img_3733October is my birthday month.  It is also the time of my Advanced Internship as a Master’s student of Social Work.  A woman at my internship who also has two sons, asked me yesterday, “You write for the paper, you are in school, you have two kids under the age of 18, how do you do it?”  It was a great question.

The answer is: I finally accepted that I have limitations. Oh gosh yes, I hate to admit that. I despise it.  It feels like defeat.  It feels like I am sitting shiva for that self. Worse, it feels like my body has won. I still remember that girl pre-Inflammatory Bowel Disease. Sure, I had episodes in my childhood. They were short lived. I am talking about “THE TIME”, the one when it came, and did not leave….EVER.

That girl.  The girl with so many dreams, boundless amounts of energy, involved in theater (most times several shows at a time), dance lessons of all kind(ballet, tap, jazz, lyrical), vocal lessons, hanging out with my girlfriends, all this plus, working a paper route and a children’s shoe store in the malls of New Jersey simultaneously. Guess you can say I have always been a Type A, or maybe restless energy, or perhaps in a positive outlook, driven. Then, it all stopped. Ended.  Just like that.

I am reading this book by Paul Kalanithi, “When Breath Becomes Air”, a  memoir of a neurosurgeon who was diagnosed with Lung Cancer and transitioned last year.  These words of his struck home, “One chapter of my life seemed to have ended, perhaps the whole book was closing. Severe illness wasn’t life-altering, it was life-shattering” (Kalanithi, p.120).

This disease, like my iPhone screens (which I can’t seem to not break) shattered my life as I knew it. I was always a list maker. A planner. I had a step by step list of how I was going to be a working musical theater actress in New York City. Every single detail. The day I was hospitalized and diagnosed, my life was never was the same.  No more plans. Due to illness, I could never keep them anyway. I still hesitate to make any plans. It hurts too much to hear the disappointment on my friends and families faces and in their voices internalizing that I am not wanting to spend time with them.

But, there was more to just longing for those days. It was longing for my health. Moving one’s bowels once a day! YES! That is something I will never know again. Being able to not think about food, water, resting, and bowel obstructions. I miss being completely ignorant about hospitals, what a ringer bag is as opposed to a regular saline bag, knowing what a PICC line is and TPN. I found it very disturbing being able to know when a co-worker asked a nurse regarding an infection in the body and being able to mentally answer, “sepsis”, and only knowing that answer because in the past five years, I have had personal experience in acquiring this not once, twice, but thrice.  Yeah, it is during those moments…you really don’t feel good to know those bits of trivia.

So, I coped with denial. And as Dr Phil’s favorite question pierced through my ears like a singing bowl, “How is that working for you?”  It wasn’t.

Last month, on September 9 to be exact, I was discharged yet again, from JFK Medical Center, my local hospital following a bowel obstruction. My body was not ready to go. I was. I begged my doctor to release me  early morning due to a meeting I had with my field supervisor at an internship that was postponed for one year due to major back to back abdominal surgeries in July 2015 and April 2016 at Columbia Presbyterian, NY. I was NOT going to allow this disease to take this away from me too. It is a hospice internship, and I am just so blessed and grateful to be able to be present for those transitioning and their caregivers. It is a passion of mine to help others. Then the realization struck me. I need to help myself in order to be able to serve others.

That is when I accepted I was not Sharon, the girl pre-IBD.I had to bury her.  Yes, I have her memory, very fond memories, and she will always be a part of me. However, she is not who I am today. I am Sharon, post-IBD, post-proctocoletomy, post-small bowel resections, a very active J-Poucher (10-12 times a day), chronically anemic, chronically low potassium, stubborn concrete bowels due to adhesions, and prone to quick and severe dehydration/electrolyte imbalances. And that is OK!  I had to bury my old way of taking care of myself, and give birth to a new way of thinking. 

fullsizerenderTo answer the very good question put before me yesterday, how do you do it? To be perfectly honest, I am struggling. Every day is a struggle. The other day I stood on my feet for hours(over 5) while making copies and did have to eventually pull up a chair. It is very challenging when you look visibly well, yet, your body is screaming something different.  This year alone, I have been in the hospital 40% of the year (this is actually an improvement from 50-60% of the year since 2011).  I crash on the weekends and during the week, I find my eyes closing by 9:30 pm.  I must admit I am counting down the weeks till Winter Break.

I am also trying, to the best of my ability, to understand that I can not have the McDonald’s, the Dunkin Donuts or other munchies. I pack lunch and snacks. For the most part, I am eating a very clean diet and take vitamins religiously.

The greatest motivation? What keeps me going? My patients. Every day they are holding on. Each day is a struggle. For some, every breath is a struggle.  I went into this internship as a servant…..a giver….and little did I know how much I would be receiving.  When I do not think I can go on, the image of my patient who drools and can’t wipe her mouth as she can’t move her arms that are all coiled up, or my patient who is so frail that they stopped weighing her at 75 lbs, or my patient who passed  on a Wednesday and I was so sure I would see him on Friday. He has reminded me that we are never promised a “see you soon”, “see you later”, or a “see you on Friday”.  Yes! I am living in the moment. In the now. This is the only moment that truly exists. The old Sharon is in the past. I can only ring in this birth month with the body I have today, the health I have today…..and today is a good day.

How do I get through every day? By living and appreciating and being grateful for every single moment of every single day.  That is how I am getting through the day! Carpe diem.

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


The WEGO Health Community team joins the Arisen Strength podcast!

A few weeks ago, the WEGO Health Community team had the awesome experience of podcasting with Shane Schulz on the Arisen Strength podcast!

Learn more about the Community Team, which is Julie, Kristen and Jackie, how we all ended up at WEGO Health and why we think activism is important!




Click here for a direct link to the show!



Feature Friday: Jenni Grover Prokopy, Chronic Conditions Health Activist

We’ve all been there. Whether it’s a new diagnosis, a problem with insurance or just one of those days when all you want to do is sleep.

But having a chronic illness does not mean you can’t have a fabulous life.

In fact, Jenni Grover Prokopy is on a mission to help all women struggling with chronic illness live their best life yet “…to nurture some of those deep relationships that you want to have, to have more success in your career, to find love, to get the kind of support you need and deserve, to have more fun… I mean isn’t that what life is about?”

You know those people you just know are here to offer good vibes and help others succeed? Jenni is certainly one of them.

Jenni was diagnosed with fibromyalgia when she was 20, and like many she thought her life was over. However, “After a few years, I started to figure out I could still lead a pretty amazing life despite illness… so I started ChronicBabe.com as a way to share my experiences and perspectives, and to build community.”

One word to sum up Chronicbabe.com? Awesome.

Within seconds of visiting the page, you feel uplifted, energized and ready to rock life. Jeeze even those withochronicbabe-logo-new-stackedut a chronic illness would find their spirits lifted by ChronicBabe’s sassy, authentic, hilarious and completely inspiring attitude.

“When I started my work, no one was writing about this – now, there are lots of places, but I still think ChronicBabe is unique in its voice and its position toward life with illness.”

ChronicBabe.com is a blog with a ton of social media presences. “I love my YouTube channel,” Jenni shares, “It’s so fun to interact with people that way. Plus, people get to see the real me and recognize that I’m not some person on a pedestal – I also have bad hair days and low-energy days but I still do my work, and I hope that inspires them.”

Any female who can still be as uplifting and awesome as Jenni on a bad hair day deserves some serious kudos.

jennicorporate-croppedI checked out the ChronicBabe YouTube Channel and as Jenni says “Video is where it’s at!” She posts weekly videos on AWAP Wednesday which stands for ‘as well as possible’, offering tips and techniques to help Chronic Babes live a daring, fun, and fulfilling life despite their illness.

ChronicBabe.com also offers a forum where fellow chronic babes can meet and discuss challenges and find support. There is even a ChronicBabe Secret Club that offers a ton of support and education each month on a theme to help ChronicBabes everywhere rock life!

But she doesn’t stop there; Jenni is working to rid the epidemic of chronic pain in our society. She is on a mission to inform the public, advocate for legislators that have similar goals, and build a bigger community. She speaks at events across the country and attends various foundations including her favorite, the U.S. Pain Foundation annual galas. “We honor tons of awesome folks with chronic illness who do such great work in their communities – it’s so fun because I get to meet some of my heroes!”

That’s really the highlight of her advocacy journey “…getting to meet women I’ve known online for a decade but didn’t know in person and hear how their life has improved because of ChronicBabe. Makes my hard work and challenges worth it!”

So now the most important question is, are you a chronic babe?

According to Jenjenniflowersni:

“Yes. Oh, wait—too fast? You have some doubts? Let’s see: Are you a chick? Check. Do you have a chronic illness? (You know, something that’s stickin’ with you, like fibromyalgia or depression or HIV?) Check, check. Are you ready to kick ass in spite of it? Are you grinning as you read that? Triple check. Yes! I proclaim you a ChronicBabe.”

Now the only question is: what are you waiting for?! Go check out ChronicBabe.com and be sure to check out their YouTube channel for AWAP Wednesdays!

And I am very excited to announce that Jenni will be releasing a new book, ChronicBabe 101, this fall so make sure to follow her Facebook and Twitter for release dates!

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





Spread the Word: September 26th is Mesothelioma Awareness Day

September 26th marks Mesothelioma Awareness Day! This day honors those have battled or are still battling mesothelioma. This day is also meant to spread awareness for the disease and the toxic natural fiber that causes it.

What is mesothelioma?

You may ask, what is mesothelioma? It’s a whole lot more than the commercials you see on television. Mesothelioma is a rare and very aggressive cancer caused by exposure to asbestos. It can affect the lungs, abdomen and heart and is typically diagnosed in the later stages due to a long latency period that makes detection difficult.meso1

Once symptoms arise, they are difficult to detect and decipher as mesothelioma symptoms since they are common ailments, like fatigue, hoarseness, nausea, weight loss, chest pain and coughing. It is easy to look past these things, or even at times have them misdiagnosed as other diseases or health conditions.

The prognosis carries a devastating life expectancy of 12-21 months. The saddest part is that it’s totally preventable. We must all come together to spread awareness for this awful disease. Approximately 3,000 new mesothelioma diagnoses are given each year, and about 2,500 people will died from it each year in the United States. Globally, the annual death toll jumps to 43,000.

While the world is making strides to ban asbestos, we’re still not all the way there. Over 60 countries have banned the toxic substance, and another small handful are expected to ban asbestos by 2020. It is sad to say that the United States does not fall under either of those buckets–another reason why we must continue to spread awareness!
How can you make a difference?

To best protect yourself and your loved ones from the dangers of asbestos and the possibility of mesothelioma, be on the lookout for asbestos dangers in your home and environment. Houses that were built before the 19meso70’s very commonly contain asbestos. For a list of places and products that may contain asbestos, click here.
In addition to educating and protecting yourself and your family, you can help spread the word through your blog or social media platforms. Every new set of eyes on this message means we’re a step closer to 100% awareness of mesothelioma and the dangers of asbestos. When every person knows, they can then protect themselves and avoid the very unfortunate health complications.

If you’d like to help ban asbestos, you can sign a petition listed by the Asbestos Disease Awareness Organization (ADAO) here! As mentioned above, approximately 60 countries have banned asbestos, which means there’s a lot of ground to cover in terms of banning it worldwide. We cannot stop fighting until this toxin is banned globally!


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


I’m nominated…now what?!


Nominated and wondering what’s next? 

Complete these 5 simple tasks in order to become a finalist!

1. Spread the word of your nomination. Tweet it, post it, email it, blog it- let everyone know you’re a nominee for the 2016 WEGO Health Activist Awards. Yes, it’s your moment to shine so own it! Share your profile link on all your social channels to capture votes!

2. Download your endorsement badge

3. Send any pictures that demonstrate your advocacy in the last year to awards@wegohealth.com

5. Send us a video on what the #HAAwards mean to you. Cell phone videos work great- make sure to film landscape!

5. Complete the sentence “I am a health advocate because…” and send to awards@wegohealth.com

Now all you have to do is give yourself a huge pat on the back for your accomplishment. You’re changing lives- remember that!

If you have any questions, feel free to email awards@wegohealth.com.


How Do I Access My Endorsement Badge?


So you’re nominated but now the big question is:



We’ve got you covered.

All you need to do is download your Endorsement Badge. You should post this badge on your website or blog to allow your followers to vote for you. You should definitely post to Facebook and tweet out your nominee profile link as well, that way followers can visit your profile and of course endorse you!

Ready to access your badge? Follow these simple steps and start capturing votes!

1.Go to the Health Activist Award Website

2.Login to nominee profile

3.Click “Get my badge” in the top banner. You can also click “Share My Profile” to share your profile to Facebook.



4.Use the drop down menu to select the nomination you would like to create a badge for. Please note if you have been nominated for multiple categories, you only need to download one badge as all endorsements are allocated to each nomination category (but if you want to download one for each category, knock yourself out! You deserve to have a brag moment.)


5.Copy the HTML Code in the white box at the bottom of the page.

6.Paste in blog. (Tip for WordPress users: Go to widgets create new text widget paste HTML code in box)

7.Tweet out your profile link and share your badge!


Best of luck!




Feature Friday: Presenting the 2016 WEGO Health Activist Award Nominees!


The WEGO Health team is super excited to present our 2016 Health Activist Award Nominees!



Each of you were nominated because you positively impacted someone’s life and that is certainly something to celebrate and be proud of- so take a moment to pat yourself on your back (yes- we are giving you permission to give yourself the credit you never give yourself!)

If you have yet to check out the nominee directory, it is most certainly something you must do! These activist all-stars are putting 110% effort into changing the healthcare landscape and empowering the patient voice. We are so grateful for the opportunity to celebrate their success and we certainly are excited to meet all the new health activists who have been nominated this year.

It continues to amaze us just how passionate these health activists are. Whether they are bloggers, tweeters, discussion leaders, Facebook leaders, they truly are taking healthcare to the next level.  They continuously provide the latest research and treatments, offer a laugh on the days you need it most and most importantly, they inspire their community to keep fighting despite their health challenges.

The nominees range from a vast array of condition areas and it really reminds us here at WEGO Health whyscreen-shot-2016-09-08-at-12-39-01-pm we do what we do, because there are SO MANY people out there ready to make a difference and we are eager to help!

So now the exciting part…Endorsements!

Endorsements will run September 12th to October 21st . Endorsements are a way to show a visual show of support (think of it as voting).

The three nominees in each award category with the highest number of endorsements automatically become finalists. However, votes are not the only way to become a finalist. Our distinguished judging panel will select 2 additional nominees to become finalists based on a number of other factors.

Now I know you’re all eager to find out how exactly you can get these endorsements. Well no worries, the WEGO Health team has you covered.

Each nominee will receive a badge that they can share on their social  channels and post on their blog/website.  All details and instructions will be sent to nominees next week in a kit filled with tips on how you can become a finalist.

We are thankful to everyone who has participated and we can hardly wait for our Awards Week, December 5th-9th.  We will be bringing you a week jammed packed with tips, tricks and tactics to assist you in your advocacy efforts (yeah…it’s going to be AWESOME!)

We do however realize there are still so many amazing health activists out there, so if you know of any all-stars who deserve some recognition make sure to continue to nominate them!

If you have any questions, please reach out to awards@wegohealth.com.


Best of luck! 


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


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

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

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

By Sharon Coyle-Saeed


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

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

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

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

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

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

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

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



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






Feature Friday: Aaron Blocker, IBD Health Activist

“I really wish that I make some kind of difference in their lives and to show theScreen Shot 2016-09-02 at 11.33.15 AMm that even though IBD is a terrible disease that we can achieve great things. Not that it is an easy journey but that we are capable of so much even if we are sick.”

Capable indeed. Aaron Blocker, who somehow manages PT appointments, doctor appointments, grad school and his advocacy work, definitely lives out his words by action.

Aaron’s initial vision was to become a physician and work with IBD patients. However, as his activism grew, so did his interest in science. In May of 2015 Aaron received his B.S. Degree in Biology Medical Sciences despite undergoing 6 years of multiple surgeries and hospitalizations. He is now a Graduate Student finishing up his Masters Degree in Biomedical Research focusing on a thesis studying the role of the gut microbiota in IBD. To top it all off, Aaron plans to get his PhD so he can continue working with IBD research.

Although you may not need qualifications to be a health activist, Aaron certainly has them!

He combines this extensive scientific background with his own Crohn’s experience to educate the community about current IBD research and how to be an educated patient, so it’s no doubt how powerful his platforms have become.

Screen Shot 2016-09-02 at 11.31.12 AMHis website, SupportIBD.org, provides resources, his published science articles concerning IBD, and product reviews. He has spoken at events, including the CCFA Louisiana-Mississippi Chapter IBD patient education event. His Facebook page now has almost 23,000 members and he has about 3,000 followers on Twitter. His engagement with his community is truly inspiring. Just take a quick scroll through his Twitter feed and you’ll find him interacting with fellow community members and always asking the community for their input on his research. Even if you aren’t in the IBD community, he is always sharing events or groups for other communities. His favorite part of the advocacy community is the camaraderie between health activists across all condition areas, sharing “We work together for one cause and that is to help patients.”Screen Shot 2016-09-02 at 11.31.55 AM

So even though he’s swamped with seminars, research papers and thesis writing, Aaron continues to lead his IBD community, “I know how hard it is to battle this disease alone and how hard it is to get through all of the information on the Internet that can be scary.”

It wasn’t too long ago Aaron was facing the loneliness a new diagnosis can bring. In 2009, when Aaron was first diagnosed, he was unaware of any fellow patients and there weren’t many outlets for meeting people facing the same condition. So Aaron set off to create his Facebook page, “Support Crohn’s Disease and Ulcerative Colitis”, to meet fellow patients, which now has a monthly reach of 200,000.

I know what you’re thinkScreen Shot 2016-09-02 at 11.32.44 AMing, holy smokes this man is unstoppable. I mean he is referred to as the Bionic Man, but this is due to the fact that both of his hips were replaced owing to a rare bone condition called Avascular Necrosis. Nonetheless, he lives life with a superhuman tendency accomplishing more than most everyday.

But Aaron admits it hasn’t always been easy and his advocacy journey has definitely had its challenges. There were many times Aaron considered giving up, debating if he was making a difference or if his focus on advocacy would harm his career as a scientist-in-training. However, he says

“…then I think about the people who depend on me, the almost 23,000 Facebook members who come to my page for help and answers who struggle with the same disease I struggle with and that’s why I keep going. Patient advocacy is done because of a passion to help people. Not the followers, the media stories about us, but the undying passion to truly help struggling patients. That’s why I advocate. Because my voice is a voice for patients who depend on us to make this journey easier and to make sure their voices are heard through me.”


So yes, I would say Aaron Blocker is unstoppable. Sure, like any human he has moments of doubt and challenges, but it is very clear he is committed to his mission of helping fellow patients within his community and perhaps Dr. Blocker will one day cure IBD!

So be sure to check out his Facebook, visit his website and be sure to follow him on Twitter.

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