Blogs, YouTube Channels and Podcasts offer a great opportunity for individuals diagnosed with LGMD to share their life experiences, challenges, accomplishments, and passions.\u00a0 They also serve as a great tool to raise awareness of LGMD.\u00a0 Below is a list of LGMD related blogs, YouTube channels and Podcasts that you may enjoy following.<\/p>\n<\/div><\/div><\/div><\/div><\/div>
Her Chronic Wellness<\/strong><\/a> – Amanda was diagnosed with LGMD2B at 14, and has since been navigating the world with this rare chronic illness. During this time, she\u2019s discovered that LGMD is a chaotic balancing act that messes with the mind as much as the body. It\u2019s long phone calls with Mom and tear-stained pillows. It\u2019s imposter syndrome and unsolicited advice. It\u2019s tricky medical bills. It\u2019s learning to say no. It\u2019s advocating for yourself. It\u2019s educating your own doctors. And it\u2019s not being talked about enough. <\/p>\n So, Amanda decided to start Her Chronic Wellness \u2014 a cozy little corner of the web that holds space for those on chronic journeys of their own.<\/p>\n<\/div><\/div><\/div> Leanne\u2019s Wheel Life<\/strong><\/a>\u00a0\u2014 Disability posing as either mental or physical limitations is so much easier to live with when shared and supported by each other. Leanne has limb-girdle muscular dystrophy (LGMD) and lives in Australia. She invites you to be part of the \u201cLeanne\u2019s Wheel Life\u201d community where you can join her to navigate and explore life together.<\/p>\n<\/div><\/div><\/div> LGMD.RU<\/strong><\/a>\u00a0is a blog about limb-girdle muscular dystrophies for the Russian-speaking community. Tatyana has LGMD 2A\/R1 and lives in Russia. She posts medical-related information that she translates from English to Russian. But recently, she began to share some lifehacks about living with disability such as muscular dystrophy. It\u2019s quite difficult to live with a rare disorder so it\u2019s important to share experience with other patients to help raise awareness and understanding.<\/p>\n<\/div><\/div><\/div> Little Miss Turtle<\/strong><\/a>\u00a0\u2014 Melanie is a French-German globetrotter who has been living with LGMD 2I\/R9 since early childhood. She writes about wheelchair-accessible travels to places all over the world. If you are looking for inspiration and possibilities for how to enjoy a fulfilling life and an adventurous life with a progressive disability, this blog is for you.<\/p>\n<\/div><\/div><\/div> Love, Ivana<\/strong><\/a>\u00a0\u2014 Ivana has LGMD and her life shattered into a million different pieces over a decade ago and instead of staying broken, she decided that she deserved a chance to live. Her writings pick up the pieces around her wherever they have fallen from, no matter how big or small. She captures the moments she once lost and also finds new ones \u2013 in hopes that the pieces one day come together into a picture more amazing than the one she once lost.<\/p>\n<\/div><\/div><\/div> MD and Me: My Life with Muscular Dystrophy<\/strong><\/a>\u00a0\u2014 Megan who lives in Alberta, Canada writes about anything and everything pertaining to her life with LGMD 2i\/R9. She\u2019ll talk about everything from her everyday thoughts to the deeper feelings. For the most part, this blog will be her uncensored thoughts about life with MD. Its purpose is to show that it\u2019s not always sunshine and roses, but her hope is that it will help you, the reader, understand more than just the surface of what Limb Girdle Muscular Dystrophy (LGMD) is and raise awareness. Life can be pretty sucky sometimes, but it can also be pretty fantastic. This blog will show you both points of view.<\/p>\n<\/div><\/div><\/div> Rollin Through Life with Maria Donadio<\/strong><\/a>\u00a0\u2013 Maria has LGMD 1B. Her blog was created to raise awareness for living with MD. She tries to connect the reader to every post so that even though they might not experience the same things. they can still understand what we go through. It has helped her share what a day to day looks like. She shares a lot of what she goes through mentally as well as physically with this disease. Maria hopes her blog will help educate people that we are able to do a lot of things, despite what society says or portrays.<\/p>\n<\/div><\/div><\/div> Simply Emma<\/strong><\/a>\u00a0\u2014 Simply Emma is a travel and disability blog focused on accessible travel and life experiences from a wheelchair user\u2019s perspective. Emma is from Scotland and has LGMD 2D\/R3. Her blog was created to encourage others, with or without a disability, to travel more and make new discoveries, whether that\u2019s abroad or in your own hometown.<\/p>\n<\/div><\/div><\/div> Traveler With Disability<\/strong><\/a>\u00a0\u2014 Jasmina and Jogoda are twin sisters from Macedonia, who have been living with a progressive physical disability, limb-girdle muscular dystrophy (LGMD), since the age of 10. They both love to travel although very often it is hard to find information regarding accessibility for people with disabilities, and for them, as wheelchair users, it is more convenient to have information ahead of time. With gratitude to all those who shared their experiences and information online, and with it, helped them during their travels\u2026.they created this website in order to provide you with useful information about traveling with a disability.<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div> Beyond Labels & Limitations<\/strong><\/a>\u00a0\u2013 Jen & John talk about living a life with Muscular Dystrophy. Topics cover a broad spectrum of topics such as parenting, travel, dating and much, much more!<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div> Brad Williams<\/strong><\/a>\u00a0\u2013 Dr. Brad Williams has LGMD 2B\/R2 and is the Director of Research & Diagnostic Innovations for the Jain Foundation (a non-profit organization focused on muscular dystrophies caused by dysferlin protein deficiency). In this channel, Brad includes include psychology\/personality types\/personal growth as well as explaining pertinent developments in LGMD research and science.<\/p>\n<\/div><\/div><\/div> John Graybill II<\/a><\/strong>\u00a0\u2013 John has LGMD 2A\/R1 and started making videos to chronical his disease progression. He hopes his videos will help other people going through the same challenges in life. Perhaps others can learn from what he has to offer in regards to physical movements slowly changing over the course of being diagnosed with LGMD.<\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Leanne\u2019s Wheel Life <\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>LGMD.RU<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Little Miss Turtle<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Love, Ivana<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>MD and Me: My Life with Muscular Dystrophy<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Rollin Through Life with Maria Donadio<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Simply Emma<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Traveler With Disability<\/span><\/a><\/h5><\/div>
PODCASTS<\/h3><\/div>
<\/i><\/i><\/span>Beyond Labels & Limitations<\/span><\/a><\/h5><\/div>
YOUTUBE CHANNELS<\/h3><\/div>
<\/i><\/i><\/span>Brad Williams<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>John Graybill II<\/span><\/a><\/h5><\/div>
<\/i><\/i><\/span>Spin AT Lightspeed<\/span><\/a><\/h5><\/div>