Відео

In case anyone else was wondering, Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin.

Can you give an example, a photo of the battery that is attached to the electric wheelchair and assists stretches that you mention in about 31:50 ?

I am 49 and living with it aswell

super guy.....beautiful...😘

This was by far the best explanation on Duchenne I could find on the internet after a friend´s son got diagnosed. Thank you Action Duchenne.

♥️♥️

Hi I'm Marcelline from Kenya I have a son who is diagnosed with DMD I need you help. I'm desperate

Thank you for your message Mark.

You was incredible, well done 👏

thanks so much for talking about this! I am a manifesting carrier and this helped me understand it a bit more :)

❤

Thanks for a great video. This raises so many really excellent points about diagnosis and treatment. Most GPs simply won’t pick up on rare diseases. Even Duchenne, one of the most common rare diseases, is often overlooked. Even specialists in related, but separate fields, won’t spot it. Like so many others, we knew something was wrong, but kept being told by doctors it was nothing. Interestingly, it was an A&E consultant who I think first picked up on it when we took our son to hospital for a leg injury. Without being specific, he said we should get our son checked out. Eventually, we got a referral to a an orthopaedic paediatrician, who said he had no concerns and told us to come back in a few years! It was only when we persisted and got referral to a really great developmental paediatrician that she picked up on Duchenne within 5 minutes with two key markers that are really obvious to anyone who know what to look out for with Duchenne: delayed speech and Gowers.

Hey dude! This is so smart! I have been trying to research for an insightful video that really informs the stuff in this UA-cam video. 👩‍⚕️ 🩺Your video reminds me of the channel from Dr Ethan! Dr's tips are totally useful and he really helped me on my finals! He is an educational Doctor! I recommend you watch his page out and give the medical student a like! 👉 #DrEthanCare

thank you very much for this breakdown of the interim results of Sarepta's 102 trial!

This is so informative, I have learnt so much from watching this. Dr. Truba is very engaging. Thank you.

Fantastic initiative. Thanks so much for this!

Yes! Please write a book! <3

Brian, thank you so much for all you've just shared. So, so helpful and insightful. As a sister of Duchenne, I would be so incredibly proud if my brother decided to share his knowledge and experiences too. You're helping so many families in guiding and sharing what you know, your experiences and invaluable hindsight.xcx

Thanks for a very informative talk.

Really interesting - thank you :-)

What wheelchair is that and is that a standing frame he is using. Thanks in advance

Lots of fun there, thank you. One father-son's DIY pattern for an adjustable stretch board: create.piktochart.com/output/30716483-self-stretching-board

Can ascend 51 injection cure limb girdle muscular dystrophy?

Ne zaman çıkacak

I want join

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