Happy Friday, Patient Leaders!
Can you believe that it’s almost time to start thinking about starting nominations for the 2018 WEGO Health Awards? It seems like it was just yesterday when we were announcing the finalists. To reminisce on some of those wonderful people, we’re featuring three of last year’s finalists to get you amped up for the upcoming awards cycle!
Multiple Systems Atrophy Patient Leader
“I was diagnosed with Multiple System Atrophy (MSA) in July 2010 and began blogging about my experiences on my Facebook page, “Living Day by Day With MSA”. MSA is a rare (3.1/100,000) degenerative, progressive, neurological disease so named because its signs and symptoms affect multiple systems of the body. There is no effective treatment and no cure; people typically live about seven to nine years after MSA symptoms first appear. I soon gathered wonderful friends who shared their experiences, as well. I wondered how we patients could share our voices with one another and with the service provider and medical community. In 2014, I created and launched dataMSA,com, with MSA surveys open to all who may have been affected by the disease – patients, caregivers, and loved ones speaking for those lost to MSA. I was guided by the mission that no revenue would be generated by dataMSA and that all respondents would remain confidential. To date, more than 550 folks from across the globe have participated and the data has been shared with neuro-researchers worldwide. dataMSA.com represents one of the largest patient-driven databases for Multiple System Atrophy, and I am proud of all those who shared their experiences dealing with this debilitating illness.”
Inflammatory Bowel Disease Patient Leader
“I advocate for multiple reasons. One reason is I want to give every one a voice, as every story is important to be heard. If I can amplify a fellow community members voice, I desire to figure out a way.I don’t want anyone to ever go through å_ of the battles I have been through…alone. I’ve been in my own health journey long enough, I know someone has to blaze the trails for me to follow, and then I can make the path that much cleaner and smoother for the next person.
Mixed Connective Tissue Disease Patient Leader
“When diagnosed with a rare condition you are often told you will never meet anyone in your lifetime with the same disease. It is a profoundly isolating circumstance. Luckily, we live in an age of technology where no one ever has to feel the cold sting of seclusion again. We are able to lift each other, teach each other, and build a support system thousands deep via social media. No longer must we face our trials and the devastation of illness isolated and afraid. This is why sharing your story, and advocating for your particular ailment is so important. You are bringing light to others darkness and you are encouraging by example. You are also educating society on the desolation of an otherwise unknown disease. You are helping to crush inappropriate idioms, spread compassion to those suffering, and possibly even make a permanent impact in the life of another human being. I became a systemic sclerosis advocate because so often we are simply told to dream of a better future, when what we really need is a roadmap for our present. I believe that map can only be written as a community of fighters. Creating positive and uplifting, yet realistic content for those battling such tragic circumstances is one of the greatest achievements a patient can attain. Your battle will be around long after you are gone, it is your legacy. ”
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!