5 Top Patient Leader Blogs to Watch

Although blogging started in the late ‘90s, it really came into its own as a major form of media in the 2000s. In 2004, Merriam-Webster even declared blog as their word of the year. As blogging grew more and more popular, it quickly became a favorite for patients. Blogging was a way for them to share their stories and to connect with one another. Blogs were a first step to forming the robust Online Patient Communities we see today.

Over the last few years, there have been a number of news stories questioning if the era of the blog is over. It is true that many bloggers aren’t as active as they once were. As blogging became a thriving industry with a variety of monetization options for bloggers, the medium did change somewhat.

In addition, as there are more and more big blogs that feature writing from many different writers, the personal blog has moved back into the shadows to a certain extent. However, the number of total blogs continues to grow each year. And for Online Patient Communities, the personal blog is still thriving.

Blogging has seen steady growth, and the trend is expected to continue. – source


Just how many patient blogs are there? It’s impossible to give an accurate number, but there are easily tens of thousands. There are a few directories of patient blogs, created by Patient Leaders to help patients find new bloggers to follow.

Lisa Emrich began a comprehensive MS Blogging Community Index in 2007 that lists nearly 1,000 multiple sclerosis bloggers. For other conditions, such as cancer, there are even more blogs out there.

In the early days of blogging, the medium stood on its own as there weren’t all the social platform options there are today. For today’s Patient Leader, the blog is usually just one tool in their advocacy arsenal.

Many Patient Leaders will maintain an active presence on multiple social media platforms in addition to their blogs and will use social media as a tool to help promote their blogs. Patient Leaders use their blogs to share their stories, to connect with other patients, to educate, to entertain, to support others, and to advocate for their conditions.


2017 WEGO Health Awards – Best in Show: Blog

For the 6th Annual WEGO Health Awards, five bloggers were selected as finalists from a larger group of nominees. These five Patient Leaders exemplify the value that blogs offer to the Online Patient Community.

Here are the top five blog Patient Leaders from the most recent WEGO Health Awards.

Top Blog Patient Leader #1: Eric of VeganOstomy

Eric is clearly making a significant impact on the IBD/Ostomy community, as he was nominated for 10 WEGO Health Awards this year. He was the winner for two categories, the Best Kept Secret Award and the Best in Show: Blog Award. He also received 15 effusive endorsements from other patients who find value in his work.

Eric launched his blog, VeganOstomy, in 2013. The name comes from the fact that he has a permanent ileostomy as a result of Crohn’s Disease and lives on a vegan diet. On VeganOstomy, Eric advocates for ostomates and offers insight and advice about living with a stoma. He also shares product reviews and recipes. Eric says that his goal for the blog is “to share my experience and offer support to those who are about to get an ostomy or who already have one.”

It is very apparent that Eric devotes a lot of time and care to VeganOstomy. His content is engaging, educational, entertaining, and always positive. You don’t have to look at much of Eric’s content to know how much he cares about his audience. His authentic empathy and compassion shine through.

For Eric, this work is a way of giving back. He writes:

“I love being active in the IBD/Ostomy community, and I feel so fortunate to be able to give back to the community that has given me the strength to push through my illness over the years.”


Top Blog Patient Leader #2: Ronny Allan of Living with Neuroendocrine Cancer

Ronny is another top Patient Leader who was honored in more than one category. He was nominated for four awards, was a finalist for three of them, and won the Best in Show: Community/Forum category in 2016.

Ronny was diagnosed with incurable Metastatic Neuroendocrine Cancer in 2010. His blog and social media accounts are platforms for raising awareness of the disease and for supporting others with the disease.

Often referred to as NET, the disease is “unusual, less common and complex.” Armed with facts, personal experience, and compassion, Ronny’s Living with Neuroendocrine Cancer blog helps to demystify this disease while offering hope to those living with it. Indeed, when endorsing Ronny for the WEGO Health Awards, fellow NET patient Michael wrote that Ronny was “an enormous source of information and hope for me and my family.” Others pointed out that part of Ronny’s charm was his way of explaining complex topics in a way that is easy to understand.

The majority of Ronny’s blog posts are educational. Examples of some of his most popular posts are “Neuroendocrine Cancer – Incurable vs. Terminal” and a NET nutrition series that includes topics like “Vitamin and Mineral Challenges” and “Gastrointestinal Malabsorption.” In all of his content, there is a through line of positivity and empathy.

Of the tireless advocacy work he does, Ronny writes:

“I like to be factual, educational, and with the occasional pinch of humour. I also want to inspire my community by putting a positive spin on life whilst retaining an element of both sympathy and empathy. I’m an internationally known advocate for Neuroendocrine Cancer using my blog to spread awareness and facts about this unusual, less common and complex disease. Consequently, I’m very passionate about moving Neuroendocrine Cancer into mainstream knowledge circles by finding brand new audiences.”


Top Blog Patient Leader #3: Vern of Leaving the Seat Down

Vern has lived with Crohn’s Disease for three decades. He received an impressive six nominations for the most recent WEGO Health Awards. Just a glance at his blog’s title, Leaving the Seat Down, gives you a hint that humor is one of the tools in Vern’s arsenal. The fact that he received nominations for the Hilarious Health Activist and Hilarious Patient Leader awards confirms it.

While he writes about difficult things on his blog, Vern can always find the humor. The tagline for Vern’s site seals it:

“Crohn’s, The Inflammatory Bowel Disease…. These are the experiences of the Crohnie, Vern… His ongoing mission… To explore strange new bathrooms… To seek out new toilets and new bidets… To boldly “GO” where no one has gone before…”

 For a chuckle, check out Vern’s ‘Twas The Night Before A Crohnie Christmas or his always expanding You Might Be A Crohnie… list.

Leaving the Seat Down began as a diary of sorts for Vern and he says that writing was a good release. When he’s not joking around, he’s sharing honest updates about his life, including his experiences with treatments and what it’s like to travel with Crohn’s Disease. The blog is still a release for him, but he recognizes that it also offers value to others living with the disease. “I try and make it humorous and helpful,” he says. Mission accomplished, Vern!


Top Blog Patient Leader #4: Tiffany Early of CrazyChronicLife

Tiffany is yet another Patient Leader who uses humor to help further her advocacy work. On CrazyChronicLife, Tiffany strives to raise awareness of chronic and invisible disorders. As someone living with Ehlers-Danlos syndrome and POTS, Tiffany has more than her fair share of challenges.

As a “seemingly healthy looking” woman, one of those challenges is dealing with the lack of understanding and stigma people with invisible illness often face. Although CrazyChronicLife does often talk about EDS and POTS, it’s really a blog for anyone with a chronic or invisible illness.

In describing her blog’s mission, Tiffany writes:

“Above all, I strive to bring laughter and positivity to the world of chronic illness, because we deserve to smile and laugh in spite of our pain.”

 While that humor and positive energy does permeate every bit of her blog, she still also keeps it real and shares some of her struggles and the pain of being chronically ill. In a recent post titled “I’m not always Pollyanna,” Tiffany writes about a momentary swell of “self-pity” that interrupted her usually positive disposition. Even in that post, Tiffany likely made other chronic illness patients smile, this time a smile of recognition and connection.

 It’s clear that Tiffany’s readers are feeling her connection and are inspired by her advocacy work. In endorsing her for the award, Amanda writes:

“Her determination to reach out to other chronically ill people in such eloquent and inspiring ways is motivating and encouraging.”


Top Blog Patient Leader #5: Uzma Yunus of UzmaMD

Uzma has a unique perspective as a Patient Leader. She is a physician as well as a metastatic breast cancer survivor. By sharing her own experiences as a patient combined with her knowledge as a doctor, other cancer patients find education, encouragement, and support on the UzmaMD blog.

In describing her blog, Uzma writes:

“I chronicle my cancer experience along with my knowledge as a doctor. Passionate about good care for everyone and helping others through their cancer.”

After her success as a blogger, Uzma is expanding by sharing her story in a forthcoming book, Left Boob Gone Rogue. Readers of the UzmaMD blog are no doubt looking forward to the book’s release. As Lauren put it when endorsing Uzma for the WEGO Health Awards, Uzma’s writing offers “excellent breast cancer education and storytelling to discuss her own journey through breast cancer. Very inspiring!”


Closing Thoughts

Is blogging dead? In healthcare, the answer is a resounding no!

Patient Leaders like these five finalists show that blogging is still a vibrant medium and is ideal for connecting to one another through story. Patient Leaders are using blogs to educate, to support, and to entertain. All of these things offer tremendous value to patients.

Just read a post or two from Uzma, Tiffany, Vern, Ronny, and Eric and you’ll see why.

Share via
Send this to a friend