Patient Leader Introductions!

Welcome! We’re so glad to have you here :slight_smile:

You’re joining a community made up of the most inspiring people you’ll ever meet.

Take a moment to introduce yourself. Let us know where you’re from, what you advocate for and what social channel is your favorite and why!

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Hey everybody!

I’m Julie Croner, I work here at WEGO Health, but I’m also a Psoriatic Arthritis Patient Leader. I live in Pittsburgh, PA (would LOVE to connect anyone local!).

My favorite channel at the moment is Instagram. I love the community there. Check out my instagram account: https://www.instagram.com/itsjustabaddaynotlife/

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Hello!

I’m Ilana Jacqueline and I’m the author of Surviving and Thriving with an Invisible Chronic Illness and a patient advocacy strategist working with biotechs, pharma, healthcare companies and non-profits doing media and sensitivity training around rare, chronic and terminal illnesses and how to treat patients as the people they really are.

My favorite social media platform is Instagram. I’m on it all day. You can find me at www.instagram.com/Ilana_Jacqueline. I love watching stories from other patient’s lives and seeing the work they do both in their careers and in their full-time 24/7 job as advocates for their own best quality of life!

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Hi!

I’m Casey - Digital Strategist at WEGO Health. Excited to connect with our network here!

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Greetings! I am Michelle Moore from Virginia Beach, Virginia in the United States and I am a Multiple Sclerosis patient and advocate. I have done a lot of advocacy overseas as I am from Norway and I’m new to the United States and I look forward to advocacy here! I am a fan of Twitter for no specific reason other than I don’t use Instagram and I really don’t like Facebook. I’m always willing to learn other platforms! I look forward to interacting with everyone.

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image Hi everyone! I’m Mary Pettigrew from Dallas, TX. I’m a patient leader diagnosed with Multiple Sclerosis in 2001. I also advocate for other chronic illness/disability communities & am looking forward to more connections, exploring new opportunities & participating with all of you anytime! I’m also a regular user/group administrator via Facebook, Twitter, & enjoy using video platforms for panel discussions too! Cheers!

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Hi!

My name is Jamie Teachey-Pyle from Camden, NC. I feel like I’ve spent my whole life advocating for other people. My brother was born with cerebral palsy. My husband was in a military accident that broke his C2 vertebrae. My mom has a tracheostomy and feeding tube after throat cancer. Through advocating for other people and teaching them to advocate for themselves I finally started putting my foot down and advocating for myself.

After years and years of misdiagnoses I was diagnosed with Ehler’s Danlos syndrome. ( and a LOT more )

I have been advocating heavily for mental health awareness and reform for many years. So many people still think it it is taboo to talk about mental health. I think it’s taboo NOT to talk about it because that’s when there could be many more tragedies. Also, mental and physical health go hand in hand.

I created an agoraphobic support group
because it is so misunderstood and people are so scared for others to know that they fear leaving their homes.

I do most of my posting on Instagram though I am slowly learning the nuances of Twitter. I also have a YouTube channel and I’m working on a website.

Illness has taken a lot of from me but it has given me a different outlook on life that’s been a gift. Previously, I was a high school English teacher. Now, after all my advocacy work and dealings with the mental and physical health field I have decided that I want to pursue work with patient advocacy.

I believe this was meant to be and I apologize for any spelling or grammatical errors. Currently, I am working only with one eye and low vision so I’m using a talk to type program.

It’s nice to meet you all.

Instagram:

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Hi, I’m Brianne!

I interview folks living with chronic illness for my podcast, No End In Sight. I am so so obsessed with sharing stories about life with chronic illness to tackle some of the isolation that a lot of patients live with and to build resources to help friends & family understand our experiences.

I’ve been dealing with tick-borne infections and mold illness, and I’m doing a new round of specialist visits right now that may or may not give me a more concrete/long-term diagnosis. We’ll see!

I live in Massachusetts and my fave social channel is Twitter for all kinds of reasons. I feel like it can be the most raw (I love instagram but personally feel pressure to only post when I have a good image to go with it), and I’ve found so much support there when I’m flaring myself. Lately I’ve also been able to connect and share stories about healthcare within the platform and that has been really awesome too!

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I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in three people (116 million) in the United States are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.

I was living my dream. I trained and performed cheerleading, dance and gymnastics starting at age 4 through college. Straight out of college I started my own cheer/dance training company. A year later I was hired by Washington State University as the head spirit program coach. I have been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over and TMJ. I lost my physical abilities was bed bound for years. Using a wheelchair to get to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. I had to become the Chief of Staff of my Own Medical Team. If I can do it, anyone can. We all just need support and HOPE!!

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Hello
My name is Eileen Davidson, I was diagnosed with rheumatoid arthritis at 29 and placed on Canada’s #1 cause of long term disability in working age adults. A single mother to her son Jacob, then just 2 at the time of her diagnosis, I realized mother’s can’t take sick days so I decided to fight my invisible enemy, arthritis. I decided if she was going to be the sick girl, she might as well kick ass at it.

In 2017 I became an ambassador for The Arthritis Society and curated blog Chronic Eileen to better educate others about the devastating effects arthritis has on the 1 in 5 Canadians living with the most prevalent health care condition. I was featured on Canadian morning show Breakfast Television to support the 2019 Walk for Arthritis, where served as a volunteer committee member and spoke at about my journey with arthritis. In 2018 I was featured as one of The Arthritis Society’s top volunteers.

Since September 2018 I sit on Arthritis Research Canada’s arthritis patient advisory board, North America’s largest arthritis research center. I have been active in ongoing research by some of the world renowned arthritis researchers and unique studies. I currently writes for the seasonal Arthritis Research Canada newsletter. Together with ARC I shares the mission is to transform the lives of people living with arthritis through research, engagement and creating a future where people living with arthritis are empowered to triumph over pain and disability.

My work has been published on almost all major health websites, Reader’s Digest, Inked Magazine, Chatelaine, Daily Mail UK and more. Healthline and Everyday Health have recognized my blog as one of the best arthritis blogs to follow. I am an active writer for Creaky Joints.

I run the largest Rheumatoid Arthritis Support page on facebook since 2017.

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Hey everyone! My name is Kristen Long and I am the Patient Leader Network Manager here at WEGO Health. Though I bounce around, I am currently in the Boston area and would love to connect with fellow leaders in real life!

I myself have a passion for mental health advocacy and love learning from the leaders in this network. Feel free to connect with me on Instagram: https://www.instagram.com/klong493/

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Thank you so much! I look forward to interacting with you!

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Hi,
I am from Pittsburgh too!

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Hi,
My name is Denelle Suranski. I am from Pittsburgh. I am very passionate of advocacy of Colorectal Cancer, especially when it comes to anyone under the age of 50. I am a stage II rectal cancer survivor. I was diagnosed at 19 and also have a genetic disorder called Lynch Syndrome.
Can’t wait to get to know some one you.
Kindest Regards,
Denelle

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Hello! I’m Leslie Krongold in Northern California.

I have a “rare” disease called myotonic dystrophy which is one of the 43+ neuromuscular diseases recognized by the Muscular Dystrophy Association (MDA). Although it’s genetic, I wasn’t diagnosed until my mid-30s. I joined an MDA support group and within a few months I was asked to facilitate the group. If not for that, who knows what type of advocate I would have been? For 17+ years I met so many families impacted by neuromuscular disease and developed an educational, positive psychology approach to handling the meetings. I left MDA to focus on my disease and started support groups for people with myotonic dystrophy throughout the US, Canada, and Europe. Most recently I’ve taken my mission to the larger community of people with chronic health conditions with a podcast and blog called Glass Half Full. So now I like to think I advocate for anyone dealing with a chronic condition and/or disability. I look forward to virtually meeting you. Oh, and I love the Facebook group for Glass Half Full because we have conversations and there’s an engagement I don’t find on Twitter or Instagram.

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Hi! I am Abby Hershberger! I am 24 years old. I got sick about 3 years ago and didn’t know a lot about chronic illnesses. I started my blog at first to get my thoughts out. It then turned into me realizing I could start raising awareness and helping people so that if they ever got sick or if they are dealing with it they won’t be blindsided. I also recently started blogging about fashion as well. Showing people its ok if you have medical devices that shouldn’t stop you from pursuing a dream.

My blog is - My blog

Instagram- https://www.instagram.com/abbyhershberger/

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Hi there!
I’m Mikayla from little Rhode Island! I was diagnosed with Chronic Lyme Disease back in May 2013 after being medically neglected for over 6 years prior. Sharing my story was nerve racking at first but I’m so beyond grateful I have. I’ve met the most genuine, strong people I’m blessed to now call my friends.
It truly has become my “why” to advocate and spread awareness for those with not only Lyme disease, but other diseases/illnesses that go ignored because of lack of knowledge/recognition. I love to help others empower themselves and get their voices heard and as always be a strong pillar of support for them.

I’d LOVE to connect on instagram! Please reach out and say hi! I’m so grateful to be a part of this community and look forward to ‘meeting’ you all! :slight_smile:

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Hey everyone!

My name is John and I advocate for bipolar disorder. I publish a weekly blog on all topics related to bipolar disorder. In addition, I explore lifestyle topics such as general mental health, fitness, finance, and family.

I’d love to connect with you on Twitter.

https://twitter.com/BipolarBattle

I’m excited to be a part of this community and to help in any way I am able. :slight_smile:

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Brianne! I also have a podcast (The Intersection of Cancer and life) and I am working on a series with other podcasters about ongoing illness to engage in dialogue about the similarities and differences between how cancer is viewed in comparison to other illnesses, and how it can be improved. I’d love to collaborate!

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I’m Emily - I was diagnosed with metastatic breast cancer in november 2017, and recently experienced a spread to my brain, liver, and lung. I have a three year old son, and am passionate about talking about illness, how it’s viewed/discussed in society, end of life issues, and the ways we can improve our organization of illness through a very damaged healthcare system. I’m an elder law attorney in new york by trade, and blog at emilyrgarnett.com “Beyond the Pink Ribbon”. I also have a podcast called The Intersection of Cancer and Life.

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