19
Aug

Feature Friday: Rick Phillips, RA and Type 1 Heath Activist

A blog about Rheumatoid Arthritis and Diabetes may seem like an odd combination, Screen Shot 2016-08-19 at 10.20.53 AMbut as a person with both conditions, Rick Phillips could not seem to separate the two. After 33 years with diabetes, Rick had figured he might have some insight to share and created his blog hoping to improve the lives of others living with the same conditions.

Knowing quite well the difficulties living with these conditions can bring, Rick blogs about his own experiences and addresses the issues of access within his communities explaining “We see restrictions on technology in the diabetes community and restrictions on access to medication in the RA community.” Rick believes this is his communities’ fight of the future.

And it only empowers the message he sees prevalent across both his communities: that no one should ever be alone in their condition and that it’s always easier with a supporting and caring communit2y.

Luckily, that’s exactly what Rick loves doing- building a community. So realizing that although the RA community is strong, not everyone knows each other, Rick decided to bridge the gap with RABlog Week.

Rick launched the first RABlog Week last year and was very pleased with the results. This year however, he is hoping even more bloggers join this 5 day event to build awareness for the RA community.

The idea of RABlog week actually came from a community of knitters (imagine that?!).The knitters raised awareness of their craft through a fiber-blogging event called Knitting and Crochet Blog Week. Then in 2010, Karen Graffeo brought the concept to the Diabetes community with #DBlog week. Seeing it thrive within the diabetes community, Rick decided to bring it to the RA community just last year, hoping to build the community through words.

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What is #RABlog Week

RABlog Week is a 5 day event, Monday September 26th– Friday October 2nd involving as many bloggers as possible. Through RABlog week, Rick hopes to build the social network of Rheumatic bloggers.

Each day highlights a new topic, encouraging bloggers to write about their own experiences and thoughts. If the topic does not resonate with you don’t worry, Rick will be offering 2 wildcard days so there’s no reason not to join in on the fun!

Who Can Join In?

Of course anyone who is personally affected is welcome to join- no need to be a professional blogger. Even anyone who cares for someone with a rheumatic condition or knows someone with a rheumatic condition is welcome to join. “After all,” Rick says, “it is these people who share the journey and assist us in living our lives in the best possible way.”

Topics of #RABlog Week

This is the best part, YOU get to choose! I Prompt selection continues until August 31st so make sure you suggest any topics you may be interested in here. And don’t worry, Rick understands the constraints RA can have on patients, saying “Given sore joints, doctor appointments and treatment complications we need extra time to write all seven blogs” so all topics will be announced in advance.

finalbadgejpgSign ups begin shortly after September 1st so make sure to watch the registration page for updates. Rick is hopeful that events like this will only solidify the community, saying, “It takes all of us, but someday we will win our war on RA and Diabetes”. So join the fight, head on over to the RABlog week page and follow Rick for all the latest updates.

 


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.

8
Aug

2016 Health Activist Awards

The WEGO Health team is overwhelmed by the amount of nominations we have received so far! We’re grateful to meet so many inspiring health activists and share in your achievements.

Now that nominations are underway, we wanted to take a minute to explain the process of this year’s program. It’s similar to People’s Choice Awards, allowing the general public to voice their opinions- but instead of celebrating actors and the top song of 2016- we are recognizing the individuals making a difference in the online health community. The Health Activist Awards consist of three separate phases: nominations, endorsements, and judging.

Nominations

Screen Shot 2016-08-08 at 12.54.30 PMThe Nomination period is currently open. We want to make sure all the health activists out there get recognized, so nominations will remain open until September 7th!  Please note there is no endorsing during this period. Instead, feel free to retweet your nomination and share your achievement with your readers/followers. This will encourage your audience to visit the awards page and potentially nominate you for multiple different categories. By spreading the word of the award program, we can build a better community for our members. The stronger the online health community, the stronger the patient’s voice!

Endorsements

The Endorsement period will run September 12th to October 21st.  Endorsements are a way to give nominees a visual show of support. During this period, each nominee will receive an Endorsement badge to post on all social platforms. The three nominees in each award category with the highest number of endorsements automatically become finalists so make sure your readers/followers know to endorse you – tweet it, post it, email it, blog it- just get it out there (and make sure to tag us, nothing makes us happier than some social media love)!

Judging

Judging will take place October 24th to November 18th. There are two rounds of judging; the first determines the five finalists of each category and the second round determines the final Health Activist Award winner.

  • Opening Screen Shot 2016-08-08 at 12.36.57 PMRound: Although the three nominees with the highest number of endorsements are automatic finalists, two additional finalists will be determined by a distinguished judging panel based on a number of factors, not simply endorsements.
  • Second/Final Round: After the five finalists are chosen, judges will score each of them based on their use of social media, their fit for the award, and how effectively they engage their online community. WEGO Health will tally these scores and announce the winners at our annual WEGO Health Activist Awards Ceremony.

 

The Health Activist Awards week will take place December 5th-December 9th, concluding with the actual Awards Ceremony.  We absolutely cannot wait to see what this year’s award program brings! Make sure to keep nominating your fellow health activists and spread the word of the Health Activist Awards! Best of luck!

5
Aug

Feature Friday: Ross McCreery, CRPS/RSD Health Activist

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

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

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

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

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

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

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

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


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

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3
Aug

It Is ALL In Your Head!

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

It Is ALL In Your Head

By Sharon Coyle-Saeed

How many times have you heard this? I am thinking many who suffer from an autoimmune disease may hear, “It is all in your head!” Well, in the case of Inflammatory Bowel Disease or IBD, it is ALL in the digestive tract and not even in the head, thank you very much.
While walking out from of all places a seminar with fellow lightworkers, granola hippies and feel good Buddhhead1isty types, a woman and I from the event started talking and lo and behold, my intestines came up. What I heard back in return was, “Oh, all digestive diseases are psychosomatic!” I really can not tell you the conversation from that point on, as she lost me at ‘psychosomatic.’ It struck a chord. A deep chord. And a dissonant one at that. And, I wanted to explore why it disrupted this interlude.

Was I the one actually in denial? Do I really think that digestive diseases are caused by stress and sweeping that under the rug? Why did this have such an effect and affect on me? Why was I getting so defensive?
First and foremost, I wanted to look up the term, psychosomatic. What exactly does that mean? Sounds so psychobabble-ish. According to Webster’s Dictionary, the simple definition is ,“caused by mental or emotional problems rather than by physical illness.” Is IBD psychosomatic? Are autoimmune diseases psychosomatic? IS this all in my head? According to this d efinition: absolutely NOT! head2
No wonder why I felt like putting on my boxing gloves and longed to go all Rocky Balboa, “Yo Adrian!” on this woman. Hey, I am a Jersey girl. Have you not seen Teresa Giudice flip the table? Mess with my children or my family (in this case my IBD family) and watch how I can turn from June Cleaver to Ghetto Irish in seconds.

Being the founder of ibdjourneys, an online support group for over 2,000 fellow IBD’ers, I read the stories and hear the suffering hourly, and I can firmly state this is not at ALL in anyone’s head. Also, since being diagnosed with IBD in 1990, and over 10 surgeries, 14 picc lines, countless NG tubes, a temporary ileostomy, a permanent J-pouch, and no large intestine later, I can personally attest to that it is not all in my head either.

It is a serious autoimmune disease. WebMD (gotta love WebMD) states the cause is unknown and that it is from “some agent or a combination of agents — bacteria, viruses, antigens — that triggers the body’s immune system to produce an inflammatory reaction in the intestinal tract. It could also be that the body’s own tissue causes an autoimmune response.”
Then why do we, in the IBD community hear this quite a bit? All in one’s head? I will tell you why. When people sometimes get stressed, they may get an upset stomach, diarrhea, nausea or stomach ulcers. Crohn’s Disease or ulcerative colitis is definitely not just a nervous stomach.

How about stress though? It is all in the dissection of the definition! With psychosomatic, the “cause” is from mental or emotional problems, IBD is clearly not caused by mental or emotional problems. However, in my humble opinion, I feel that EVERY single health condition can be aggravated by stress.

AND this is where it gets tricky! Stress may bring an illness out of remission or worsen a flare up, but it is NOT the cause of the underlying condition. ….whatever that condition may be. Also, key word is “may”. Sometimes an illness may creep out when we are most relaxed and not stressed without any warning. I can only speak to IBD and for this health condition, there is no set rhyme or reason…..for cause, for treatment, for diet. It truly is so individual that one size definitely does not fit all. WE all can support each other on our journey and find the similarities, yet, everyone’s journey is so unique.

Ultimately, my reaction of being defensive is simply from hearing over and over, meditate, chillax, let it go, and guess what? I have tried ALL of those things! Bottom line is: when this disease wants to attack, it will. Whether I am singing kum ba yah or not…..so do me a favor, don’t say it is “all in my head” or that my disease is “psychosomatic” because that pisses me off and I am trying to not get stressed here.head3


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.

29
Jul

Feature Friday: Molly Schreiber, Rheumatoid Arthritis and Type 1 Diabetes Health Activist

image1 (1)A positive attitude and a healthy dose of humor are Molly Schreiber’s go-tos when it comes to dealing with her chronic conditions. Anyone scrolling through her tweets or Facebook posts will find themselves smirking from her witty comments and her humorous approach to a challenging life with Rheumatoid
Arthritis and Type 1 Diabetes.

However, humor wasn’t always in the picture. When she was initially diagnosed with Rheumatoid Arthritis, she turned to the Internet in hopes of not feeling so alone, only to find some alarming information.

 We’ve all been there – a simple Google search unexpectedly reveals terrifying side effects and horror stories – a harsh contrast to the information you envisioned finding! Like so many people, Molly’s illnesses began to make her feel afraid and alone.

Molly SchreiberThat is the sole purpose of Molly’s health advocacy; to make sure others are not alone. Especially when it comes to a condition like Rheumatoid Arthritis, Molly explains “…it can really alienate you from others, simply because the disease isn’t easy to understand.” 

 This connection is her absolute favorite part of health advocacy. The impact of two individuals sharing a similar experience can be so powerful! In fact, her favorite conference has been HealtheVoices simply because she was able to connect with so many individuals, even those with different diseases, and create friendships that will last a lifetime!

 Unfortunately, like many, Molly recognizes the disconnect between patients, providers, insurances companies and drug manufacturers. She makes the point that “Everyone is fighting for their own bottom line and the person behind the patient is lost in all of this.”Screen Shot 2016-07-26 at 10.16.39 PM

 But all hope is not lost. Molly hopes her advocacy efforts can fill that void. Her wish is that “…a newly diagnosed patient with RA or Type 1 would immediately know that there is a huge community out there with open arms.”

 So if you’re looking for a community or maybe a good laugh, head over to Molly’s TwitterFacebook or blog!


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 andFacebook. 

28
Jul

Fifth Annual WEGO Health Activist Awards

Nominations Are Now OPEN (1)

The Fifth Annual WEGO HealthActivist Awards have officially begun and nominations are now open!


The WEGO Health team is beyond grateful to be part of a program that recognizes the Health Activists who have made a difference in the online health community. There is nothing more rewarding than celebrating the tweeters, Facebook posters and bloggers who continuously empower other patients and advocate for their community.

We are looking to recognize all of the great Health Activists out there, so please take a moment to tweet, blog, email or post to Facebook to let your friends, family, fans and followers know how they can get involved!

If anyone has inspired you or helped you along your health journey, take the time to say ‘thank you’ by visiting the nomination page- it only takes 1 minute!

Make sure to check out the Awards website to learn more about the 2016 award categories. With 14 awards, there is something for everyone, so don’t be shy- start nominating your favorite leaders today!

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26
Jul

My First TEDx Talk (And How I Got It)

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

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

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

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

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

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

“How do you get a TEDx Talk?”

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

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

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

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

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

Amy3Who is TED?

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

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

Detours Worth Spreading

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

Amy4

So I figured it could help other people too.

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

amy5

Why I’m a Detourist

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

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

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

Detours Keep Going…

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

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

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

What is your idea worth spreading?

Watch the video here.


Amy Oestreicher B&W 2006

 

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

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22
Jul

ICYMI: July #HAChat hosted by Aaron Horton

This month we were joined by Aaron Horton, The Mesh Warrior, and engaged in a conversation about the biggest surprises and lessons learned in our health journeys.

Aaron is a mesh injury awareness health activist who is starting the important conversation about transvaginal mesh. She founded the Mesh Warrior Foundation to raise awareness for those who have been mesh-injured and to also give them a place to connect and educate.

 Make sure to follow Aaron’s advocacy on her blog, her facebook, and her twitter and read through this great discussion we had!

22
Jul

Feature Friday: Amy Ohm, CEO of Treatment Diaries

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

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

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

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

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

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

Patients have the power in this!

 


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

 

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15
Jul

Feature Friday: Lori-Ann Holbrook, Psoriatic Arthritis Health Activist

WEGO Health recently had the opportunity to connect with Lori-Ann Holbrook, a health activist who welcomes readers into the daily life of an active city girl with Psoriatic Arthritis.

Utilizing her blog, CityGirlFlare, and twitter (@CityGirlFlare), Lori-Ann shares her daily experiences, as well as heath tips and insights as to how she continues to lead a fun, loving life full of shopping, museums, shows and plenty of walking despite her chronic conditions.

Get To Know Lori-Ann Holbrook | WEGO Health Patient Influencer Spotlight wegohealth.comDiagnosed with both psoriasis and psoriatic arthritis in 2012, Lori-Ann was introduced to the world of Health Advocacy by a woman she met at an event. After learning of the woman’s blog about Psoriasis, Lori-Ann was inspired to create her own blog in hopes of educating and encouraging fellow patients as well as raising awareness for Psoriatic Arthritis.

Lori-Ann believes her biggest lesson has been not to hide her chronic conditions. She recognizes her conditions can be embarrassing, but reminds fellow patients within the community that “…you are in control of what they [others] think. You have the opportunity to explain to them what’s really going on. You have the opportunity to create awareness.”

And that seems to be exactly what Lori-Ann is doing. With over 2,000 followers on Twitter (and rapidly growing!), Lori-Ann offers humorous memes, informative research findings, and healing tips to continue to inspire and educate the Psoriatic Arthritis community.

The hope of CityGirlFlare is to encourage other patients to connect and share their story, but not just those with Psoriatic Arthritis. After attending a couple HealtheVoices! conferences, Lori-Ann appreciates the opportunity to learn about other bloggers and their chronic conditions. She has found health advocacy and its growing communities have created a sense of belonging for so many struggling with various chronic conditions. She reminds all patients, “The world needs you and Me. Speak up for your condition.”

Visit City Girl Flare for insights and tips on living an active life with Psoriatic Arthritis!


Kristen Long, WEGO Health Activist Awards Coordinator

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

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