There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.
To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.
Perhaps you’re looking to start a blog, create a new strategy or maybe you just need some inspiration, these ten bloggers are the ones to watch in the online health community!
Ronny Allan
Neuroendocrine Cancer Patient Leader
Instagram | Facebook | Twitter
Ronny Allan was diagnosed with incurable Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial flushing (Carcinoid Syndrome). He is an internationally known advocate for Neuroendocrine Cancer using his ‘Patients Included’ accredited blog site to spread awareness about this unusual, less common and complex disease. Ronny wants to inspire his community by putting a positive spin on life whilst retaining an element of both sympathy and empathy. He is very passionate about moving Neuroendocrine Cancer into mainstream knowledge circles by finding brand new audiences. Connect with Ronny, 2018 Best in Show: Blog winner.
Nadia Fuad
Crohn’s Patient Leader
Instagram | Facebook | Twitter
“I began crocheting to pass the time during all my numerous hospital stays I had endured through my journey with Crohn’s disease. Soon this hobby took on a life of its own and I began to crochet as a form of therapy. I love to pick up a hook and start creating. Creating things helps me feel accomplished. I started a mini shop, called YARNutopia, to sell some of my crocheted creations in 2012. A portion of each sale is donated to research to find a cure for inflammatory bowel diseases, a disease that has affected me personally. I feel that out of something negative, I needed to turn it into something positive, and for me to not allow this disease to take from me more than it already has.” Learn more about Nadia’s blog.
Evie Shallom
Cancer Patient Leader
“My name is Evie and I am a survivor of Hodgkin’s lymphoma cancer. I was diagnosed on the 3rd of March 2014 and although I am officially cancer free, I am still suffering today. I made a blog while I was going through my treatments, I saw a lot of people made YouTube videos and blogs but I never really saw a cancer blogger. I am sure there were many, but I never found one. So I set my own little blog up and I posted what I was going through and how it affected me. Since then I have grown a blog that many cancer sufferers read and enjoy! I have worked really hard on this blog and I love having distractions and things to focus on!” Get inspired by Evie.
Rebecca Lombardo
Mental Health Patient Leader
Facebook | Twitter
“At 19 I was diagnosed with bipolar disorder. I’ve battled mental illness on many levels most of my life. In 2013, I nearly died by suicide. When I left the hospital, I knew I had to make a change. I started a blog detailing my struggles and before long I was hearing from all over the world. Eventually, I turned my blog into a book that is available on Amazon now. I still have my blog and I also write for The Huffington Post. Most recently, my husband and I began hosting our own mental health podcast called Voices for Change. Every day I speak with someone that feels my book helped them or someone that needs advice. I’ve been happily married 15 years and I’m incredibly grateful I’m still here.” Follow Rebecca and more about her advocacy.
Kirsten Schultz
Arthritis Patient Leader
Facebook | Twitter
“I’m a genderqueer disabled writer and activist – and proud of it! I live with Systemic Juvenile Idiopathic Arthritis, mental health conditions, and a long laundry list of other stuff. On Not Standing Still’s Disease, I focus mainly on disease-/illness-/disability-specific issues, becoming your own advocate, product reviews, and changing the world of medicine. I address issues like sex, intimacy, relationships, and self-esteem with illness and disability on Chronic Sex. There, I also focus on LGBTQIA+ issues, reproductive health, and intersectional thinking. Join us Thursday nights at 8 pm Eastern for #chronicsex chat on Twitter! My motto: do no harm but take no sh*t.” Connect with Kirsten.
Jen Campisano
Breast Cancer Patient Leader
Facebook | Twitter
“I write to share my story of being (mis)diagnosed with terminal cancer, facing my mortality with a toddler in tow, the sometimes messy reality of recovery, and life with a baby and an autoimmune disease after cancer. I think our stories have the power to connect us, and make our experiences a little less lonely / terrifying. I also believe our voices have the power to enact positive change in our healthcare system because no one understands what’s lacking better than the patients who are trying to navigate through these murky waters.” Learn more about Jen’s blog and how she’s helping others.
Bruna Rocha Silveira
MS Patient Leader
“I have Multiple Sclerosis since I was 14 years old. In 2009 I started writing a blog about living with MS because I wanted to find younger, like me, who have the same experiences, which suffered the same fears. The blog grew and today I talk every day to hundreds of people who have been diagnosed and do not know what to do. It is not easy to know that you will have a disease for the rest of your life when your life has just begun. I write and share my experience to encourage people to live a happy life with MS. I believe that the more awareness you have about the disease itself, more mechanisms to facilitate your life you develop. I work for it.” Check out Bruna’s blog to learn more about her journey.
Bukky Adeyokunnu
Sickle Cell Patient Leader
Instagram | Twitter
“I wanted to capture how it’s an invisible illness. You see me and I look completely normal – I go to work, I work out , and chill just like everyone else. When I go ghost due to crisis pain, I often hear ‘but you don’t look sick’, which is exactly how I want to live my life. I’ve never let it define who I was and what I was capable of doing.” Explore Bukky’s captivating blog!
Maria Thomas
Hyperhidrosis Patient Leader
Instagram | Facebook | Twitter
“Hyperhidrosis (excessive sweating) affects five percent of the global population, but I bet this statistic is actually much greater. The problem? Too many people are ashamed of the skin they’re in and don’t speak up or seek help. It’s time to end the stigma. I’ve lived with hyperhidrosis all of my life and offer a unique perspective on this condition that can be mentally, socially and professionally debilitating. I’m creating hyperhidrosis hope and awareness one drop at a time, living my truth and letting others know they are not alone. My story is your story.” Connect with Maria to learn more.
The Invisible Hypothyroidism
Thyroid Patient Leader
Instagram | Facebook | Twitter
“I started advocating with one hope: to reassure other thyroid patients every single day that they are not alone. 750 million people worldwide have thyroid disease, but no one talks about it openly and a lot struggle in silence; desperate for someone to listen and understand. My writing comes from a deeply authentic and honest perspective as I not only share what I learn from researching while on my own journey back to good health, but also my own completely honest experiences that resonate with many. I’m on a mission to reach as many thyroid patients in need of support as possible and challenge the severe lack of knowledge about hypothyroidism. I know this is my purpose in life.” Click to learn more about this Patient Leader!
Have you ever heard the saying “laughter is the best medicine”? Check out 4 reasons why you should be using more humor in your advocacy work.
Check out the photos from the live #WEGOHealthAwards ceremony. See the full event recap for pictures, interviews, a live stream & more!
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from WEGO Health http://www.wegohealth.com/2019/03/22/2018-top-10-patient-leader-blogs/