Blog

Category: Feature Friday

Feature Friday: Morgan Gleason, Rare Disease Patient Leader

Do you remember being eleven years old? Most of us can only recollect things related to braces, cooties and the playground.

Morgan Gleason however, has a different story.

Her family knew Morgan to be a normal kid- she spent time with friends, was active, and participated in cheerleading. Then one day Morgan began to notice a sudden weakness, and found it harder to complete flips and stunts. Shortly thereafter, she developed a rash  on her elbows and knees as she continued to grow even weaker.

At age 11, Morgan was diagnosed with a systemic autoimmune disease called Juvenile Dermatomyositis (JDM). This disease is very rare and only affects 1 to 3 in a million people per year- clearly the odds were not in her favor.

(more…)

Webinar: How To Be An Empowered Advocate

You were just told that you or a loved one has a health condition or a disability – now what do you do?

Once you get over the denial phase of the diagnosis, only then can you start advocating. Only then can you begin to look for the best healthcare providers, to provide the best quality of care. So how do you become an empowered advocate? 

(more…)

Feature Friday: Martinus Evans – Obesity/Weight Loss Patient Leader

After 20 weeks of physical therapy for a hip pain, Martinus Evans visited an orthopedic specialist hoping for some answers.

“Mr. Evans, it’s because you’re fat and you need to start walking and losing weight.”

Although shocked and embarrassed, Martinus’ response was clear.

Screw walking, I’ll run a marathon.

His doctor said it was the stupidest thing he’s ever heard (#WhatTheHealthcare) but Martinus was determined to do what his doctor felt was the impossible.

Martinus left the doctor’s office, bought some running shoes and created his blog, 300 Pounds and Running.

Starting his blog wasn’t a hard decision, “When someone tells you no you have to prove them wrong.”

And prove him wrong he did. Martinus has ran numerous races the past couple of years.

(more…)

#FeatureFriday: Ilana Jacqueline, Rare Disease Patient Leader

February 28 marks Rare Disease Day! The day was created to bring widespread recognition to rare diseases and the patients they impact. On February 28th, patients and families around the globe will share their stories in hopes of promoting awareness of the challenges and needs of those within the Rare Disease Community.

WEGO Health is the first to encourage communities to come together and raise their voice because one by one, our voices can make a difference.

Take Ilana Jacqueline for instance. Day in and day out, she’s effortlessly advocating for her community. At just 22, she created her award-winning blog, Let’s Feel Better.

“Like most patients with rare diseases, I was tossed around for most my life from specialist to specialist without a diagnosis. When, after 19 years, I was finally diagnosed with Primary Immune Deficiency Disease I was relieved, but mostly I was furious. I just didn’t understand how so many doctors could fail to diagnose me.”

(more…)

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.
jenniserious

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.

 

 

 

Ready To Learn More About WEGO Health?

I’m ready to work with a Patient Leader

Send this to friend