Home /Company Info/Blog/Patient Leader #FollowFriday – May 18th, 2018

Patient Leader #FollowFriday – May 18th, 2018

Can you believe that the WEGO Health Awards launch in just two weeks? We’re getting so excited that we thought we’d take a trip down memory lane and revisit these past finalists. Each year we are so impressed and inspired by all the nominees, so take a few minutes to learn about these three and share our wonderment!

Have a great weekend, everyone!

 

Sabrina Cannella

Ehlers-Danlos Syndrome Patient Leader

Twitter | Website | Facebook | Instagram

“It was early in life that I became a firm believer in Mahatma Ghandi’s words “Be the change you wish to see in the world”. Growing up I was a healthy active child with most of my time spent as a competitive dancer, however nearly 8 years ago my world changed when I was admitted to the local children’s hospital in Toronto. What began as a presumed case of appendicitis quickly turned into a list of rare complex chronic illnesses that affect her organs and organ systems. It was during one of my first and longest hospital admissions where I found myself feeling so incredibly alone. I looked at myself in the mirror and didn’t not recognize myself in any sense. I lost many friends, some family, and I was stuck in a cycle of doctors who did not understand my conditions or how to treat me. That’s when I was made aware of the gap in our healthcare system between patients and their care team. Sometimes it doesn’t help to listen to doctors give you difficult news, or to face them while they ridicule you because they can’t understand, it isn’t comforting to hear that you don’t have any more options and though it might be silly it is incredibly frustrating to struggle with undergoing a procedure and having a nurse make you feel that you’re acting unreasonably. I decided to be that person that would bridge that gap. When I made that promise to myself in 2011 in a lonely hospital room, I intended to save and help others and bring happiness throughout their journeys. Never would I have imagined that I would end up being the one who is filled with happiness and gratitude. I have found that my voice is just as powerful as my actions are. It is an honour to be able to speak out in the community about conditions that I face, and so many others do. I do it not for pity, or for sympathy but really I make my voice heard so I can save someone else from feeling alone and lost in their diagnosis of a rare disease then my job is fulfilled. I always say that my main goal in life, despite all I am enduring, is to leave this world a better place than when I entered it. I have learned that my pain does me no good unless I transform it into something that is and am so grateful for the opportunity with WEGO to help me get closer and closer to that goal.”

 


Tom Kindlon

Myalgic Encephalomyelitis Patient Leader

Twitter | Website | Facebook

“I have Myalgic Encephalomyelitis (ME)*, sometimes called Chronic Fatigue Syndrome (CFS) since February 1989, when I was just 16. I wasn’t diagnosed till autumn 1994 by which time I was severely affected. I blame the late diagnosis, and following advice to exercise, for the severity of my illness as in the early years I was only mildly affected. Preventing others falling into such a debilitated state, particularly long-term, is one of the things that motivates me. I try to do this in two main ways: (i) trying to increase awareness and understanding of ME/CFS generally both among relevant professionals and also the general public; (ii) I also want to raise awareness specifically about the potential dangers of pushing yourself too far with exercise and similar interventions. I follow the medical literature closely to help with this and have published various papers and letters in peer-reviewed publications on the topic. As well as preventing others becoming as ill as I have become, I want to also improve matters for myself and the millions of other patients with ME/CFS around the world. We have started calling ourselves the “millions missing” which refers both to the lives we are missing out on and also to the fact that we feel the condition has been largely forgotten about and neglected compared to some other better well-known conditions. I believe there is power in numbers and together we can make a difference to improve matters for people affected by ME/CFS and their loved ones. I very much hope there will be a cure or, if not, better treatments (ideally ones that are easily accessible) in my lifetime.”

 


Marla Murasko

Down’s Syndrome Leader

Twitter | Website | Facebook | Instagram

“As a Down Syndrome Parent Influencer, I am extremely passionate and dedicated to spreading awareness about Down Syndrome and advocating for the rights of individuals with Down syndrome to live a quality of life. I make it my mission to educate others to have a growth mindset when it comes to looking at inclusion not only in the schools but in their community. I do this not only for my son, but for all individuals with Down Syndrome young and old, and for those not yet born. Why? Because I believe their lives matter, as well as their education and well-being, their independence, opportunities for employment, and being valued as a member of their community. They deserve the right to grow, develop friendships and experience what life has to offer. This is my life’s mission – not only to make a difference but to be a facilitator for change!”

 


If you’re feeling inspired by these top Patient Leaders, you should join our network!

When you join our Patient Leader Network you’re first to know about the new and exciting things we’re doing at WEGO Health. Not only will we reach out to you when we have paid opportunities in your condition area, but we’ll also connect you with other Patient Leaders so you can share ideas and help each other amplify your messages. What are you waiting for? Join today!

Did you miss our last #FollowFriday? You can catch up here!

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