Spinal Muscular Atrophy Patient Leader #FollowFriday – April 20th, 2018
On this #FollowFriday, we’re featuring three really powerful Patient Leaders. Below you’ll meet Alex, Ariella and Heather who are living with Spinal Muscular Atrophy. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. We encourage you to check out these Patient Leaders, learn more about SMA and help them spread awareness! Have a great weekend, everyone.
SMA Patient Leader
“Having Spinal Muscular Atrophy (SMA) has made me the person I am today & has also guided my amazing life experiences and wisdom into the ability to create my own online business & the Love Your Genes Movement (WheelchairRapunzel & Co.) Because of SMA, I get to share my story with the world by blogging about my life while breaking barriers one Love Your Genes piece of merch at a time. No matter what disability you have, you can be beautiful, stylish, & embraced.“
SMA Patient Leader
“As a result of my disability, I have become a disability activist, advising politicians on disability rights and policy and helping other people with disabilities or chronic illness become their own best advocate. I’m a member of many support groups for people with SMA, like the Facebook group “Living with MD.” It is support groups like these that help me learn of treatment, assistive technology and medical equipment, of which most medical professionals are unaware.
In my personal experience as a disabled person, I am often treated as invisible, unintelligent and child-like by everyone from opposing counsel to doctors and nurses. It is important for those with SMA to refuse this treatment, always be prepared before seeing a doctor, dress to impress, and use the higher intelligence those with SMA typically have to communicate with others and earn their respect. And use others with SMA as a resource for support and advice. We are each other’s greatest asset.
Never lose hope or allow a bad diagnosis make you give up. I’ve lived 32 years more than expected, earned my bachelors in business and Juris doctorate from Emory University and will begin a Masters in Public Policy and Administration at Harvard Kennedy School this summer. SMA may make life more difficult. It might cause you to become sick more often than your non-disabled peers. And inaccessibility and discrimination is certain to affect your life. But allow these weaknesses and struggles become your strength. Never stop fighting, and SMA will be powerless to destroy your dreams.“
SMA Patient Leader
“Spinal Muscular Atrophy (SMA) is a rare disease, and for the first 20 or so years of my life, I only knew two other people who had SMA – and one of them was my sister! When you have a disease like SMA that affects all aspects of your life, it can be really hard to find information about how other people deal with it – in terms of medical decisions and treatment, but also in terms of everyday things like going to school and working. By sharing my life on my blog, I’m connecting with others who have SMA, and helping further these important conversations. I also make sure my blog talks about non-SMA parts of my life, too, so that people understand that for people with diseases like SMA, it’s a part of their life, but not their whole life.”
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!