Blogs, YouTube Channels and Podcasts offer a great opportunity for individuals diagnosed with LGMD to share their life experiences, challenges, accomplishments, and passions. They also serve as a great tool to raise awareness of LGMD. Below is a list of LGMD related blogs, YouTube channels and Podcasts that you may enjoy following.
BLOGS
Her Chronic Wellness – Amanda was diagnosed with LGMD2B at 14, and has since been navigating the world with this rare chronic illness. During this time, she’s discovered that LGMD is a chaotic balancing act that messes with the mind as much as the body. It’s long phone calls with Mom and tear-stained pillows. It’s imposter syndrome and unsolicited advice. It’s tricky medical bills. It’s learning to say no. It’s advocating for yourself. It’s educating your own doctors. And it’s not being talked about enough.
So, Amanda decided to start Her Chronic Wellness — a cozy little corner of the web that holds space for those on chronic journeys of their own.
Leanne’s Wheel Life — 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 “Leanne’s Wheel Life” community where you can join her to navigate and explore life together.
LGMD.RU is 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’s quite difficult to live with a rare disorder so it’s important to share experience with other patients to help raise awareness and understanding.
Little Miss Turtle — 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.
Love, Ivana — 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 – in hopes that the pieces one day come together into a picture more amazing than the one she once lost.
MD and Me: My Life with Muscular Dystrophy — Megan who lives in Alberta, Canada writes about anything and everything pertaining to her life with LGMD 2i/R9. She’ll 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’s 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.
Rollin Through Life with Maria Donadio – 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.
Simply Emma — Simply Emma is a travel and disability blog focused on accessible travel and life experiences from a wheelchair user’s 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’s abroad or in your own hometown.
Traveler With Disability — 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….they created this website in order to provide you with useful information about traveling with a disability.
PODCASTS
Beyond Labels & Limitations – 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!
YOUTUBE CHANNELS
Brad Williams – 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.
John Graybill II – 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.
Spin AT Lightspeed – Andrew who has LGMD 2A/R1 lives in the United Kingdom. He and his son have been filming their urban adventures from the perspective of his power wheelchair as he zooms around cities throughout the world and collated their adventures into this YouTube Channel. Hopefully, the videos can show others what they have learned (often the hard way) when venturing out on family days. When you see someone else accessing public transport or visiting a museum sometimes it can give you the confidence to try this yourself. Each main VLOG episode starts with Andrew and his son discussing interview style the upcoming episode then a 4-6min collage of pictures and video from the adventure. Another interview style interlude in the middle discussing the second half followed up by a second 4-6 minute video clip and a conclusion at the end.
La Fondation Speak – In this channel, The Speak Foundation posts videos from sessions at the 2019 National LGMD Conference as well as other educational presentations that they host for the LGMD community throughout the year.
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