Пікірлер

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  @MujiburRahman-z1u21 күн бұрын

  ❤🎉

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  @MujiburRahman-z1u21 күн бұрын

  ❤

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  @hmmpanum4 ай бұрын

  •

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  @transmedia854 ай бұрын

  kzread.info/dash/bejne/iZOclNORmqzWdZs.html

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  @transmedia854 ай бұрын

  kzread.info/dash/bejne/iZOclNORmqzWdZs.html

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  @rameshkannarameshkanna75226 ай бұрын

  DMD treatment

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  @rowen17217 ай бұрын

  'Promosm' 💦

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  @rameshkannarameshkanna75228 ай бұрын

  Please invent new medicines to cure DMD ducenne muscular Dystrophy

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  @rameshkannarameshkanna75228 ай бұрын

  When you invent new medicine to cure the DMD god help us

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  @rameshkannarameshkanna75228 ай бұрын

  Please DMD ducenne muscular Dystrophy cure medicine invented as early as possible god save our child

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  @rameshkannarameshkanna75228 ай бұрын

  When will get New medicine to cure DMD ducenne muscular Dystrophy God please help us

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  @DuchenneUK8 ай бұрын

  You can find the latest updates and new treatments here on our website: www.duchenneuk.org/our-research/

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  @mrmiteva9 ай бұрын

  X-men, here we come lol

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  @mrmiteva9 ай бұрын

  then that patient has a child with another patient that has had different gene therapy, and that compounds over several generations until one grows fins lol

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  @rameshkannarameshkanna75229 ай бұрын

  Curable or not curable DMD ducenne muscular dystrophy tell us

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  @tungle91549 ай бұрын

  Jack Willis?

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  @dl939211 ай бұрын

  OK

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  @dunphymarc Жыл бұрын

  Fair play to you man

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  @joshuaharrison4905 Жыл бұрын

  You know what as a player, not keen. As a man, top 👌

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  @AbduDoesStuff Жыл бұрын

  shiv was in my high school and his formwas in 7HEB. sadly, shiv has now passed away in may. Rest in peace.

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  @DuchenneUK Жыл бұрын

  I am so sorry. He inspired so many people with his smile.

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  @michelledaniels-qj6gj Жыл бұрын

  Excellent 🥰

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  @savadesoi1837 Жыл бұрын

  ❤

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  @cyrilpala8315 Жыл бұрын

  ❤❤

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  @gurumomsstyle820 Жыл бұрын

  Me India se hu

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  @gurumomsstyle820 Жыл бұрын

  My son's DMD patient 😢😢 please help me

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  @DuchenneUK Жыл бұрын

  I am very sorry, and here is information that I hope helps you in getting the support you need, and the care for your son. We have information about Duchenne Muscular dystrophy and managing it within the UK healthcare system on our website (www.duchenneuk.org/). There is information about treatment and help in India at the Neuromuscular Centre of Excellence (www.neuromuscularindia.com) and the Indian Muscular Dystrophy Association (iamd.in).

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  @jaysimoes3705 Жыл бұрын

  Since the honeymoon stops at age 7 moreless, I wonder how it is related to the fact that corticosteroids damage the membrane. SO that becomes the overarching process that endls this period of progress. Since Vamorolone stabilizes the membrane, it seems fair to wonder of from age 7-10 years Vamorolone will distance itself and may continues the honeymoon period. I don't think much data is available yet (?) Also: since weight gain is a thing in kids with duchenne, predn and emflaza makes things a lot worse. SO weaker muscles, more weight, more damage etc. I wonder how the diminshed chance of weight gain affects the outcome with Vamorolone.

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  @numan98i Жыл бұрын

  #mrbeast helps #people he is the best #youtuber

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  @numan98i Жыл бұрын

  pewdiepie has connections with MrBeast

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  @numan98i Жыл бұрын

  #pewdiepie

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  @subtopewdiepie2146 Жыл бұрын

  #EndDuchenne

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  @elizabethfox667 Жыл бұрын

  ❤

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  @FLiickiiLiickiiBaiiBii1308 Жыл бұрын

  Happy birthday Pixie Lott Love from Australia

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  @grovesy333 Жыл бұрын

  Has this girl ever aged ?

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  @pageyd Жыл бұрын

  Our son won't be using steroid treatment but there was only emergency information related to those on steroids. Could you please point to emergency treatment without steroids

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  @DuchenneUK Жыл бұрын

  Hi, if your son is not on steroid treatment then the information about adrenal suppression will not apply, as your son's adrenal glands will function normally. However, the other information will apply to every boy with DMD - for example, he will have a higher risk of fat embolism syndrome after a fall, higher risk of constipation, medical staff should use caution when giving oxygen, and should not be given suxamethonium (a type of anaesthetic). All of the information on this page will apply, apart from the questions relating to steroids and steroid dosing: www.duchenneuk.org/dmd-emergency-support/. I hope this helps, but if you have any further questions feel free to get in touch with us at [email protected] and we can pass your questions on to the medical specialists

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  @pageyd Жыл бұрын

  @@DuchenneUK thank you very much

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  @judeboyd4722 Жыл бұрын

  Thank you! AND KEEP IT GOING MATE. Not many people have heard of DMD and My son Anthony has it, he'll be 7 in 2weeks. My mission is to get it out there too, To make people aware of this illness,as it's quite rare, life really is a race against time for these boys, its shocking how fast this life limiting illness takes ahold of these boys, And the most shocking thing is, that there is no cure!! We are Mighty Red Fans, and i got Anthony's logo printed on a top: ANTHONY'S FEARLESS MINI MO'S DMD CLUB. unfortunately It's very hard to get a ticket to our games, But I have managed to go to a few LFC Foundation legends matches, and waved Anthony's top around like a lunatic! I hope to get as many people as I can to notice it and ask what it is, And a few people have! But we need to raise awareness of DMD a lot quicker, to enable funding for research into a cure. I'm even willing (Planning) to sit smackbang in the middle of Goodison, in between all the blue fans, Proudly wearing Anthony's red top!! I'm quite looking forward to doing that actually 🤭. Joking aside when it comes to it, Liverpool red an blue will stand together!! So in the near future, I'm going to sew half a red an half a blue top together, and get my fearless son's logo printed on the back, hoping that one day I can start a charity up for these boys . . . . To Walk on. . . . We are so lucky, and I'm so thankful too,to Anthony's specialists Dr Madhu and Alison Brown,(mostly for putting up with me!!) and the rest of the neuromuscular team at Alder hey hospital, already they have gone above and beyond their job rolls in supporting us not just Anthony, i really don't know what I would of done without them,these past few years have been though, having to adjust and take everything inn,even harder to do alon. I really don't know how they do it, heartbreaking tough job! It's really comforting and helpful for me, knowing that these people "will be there from now until the end" no matter what. AND "They will make sure Anthony goes through his life, as smoothley and painlessly ,as they possibly can". And I think, Dr Madhu is Absolutely Amazing! And that's just talking about me. He's the only person I've ever come across who can stop me talking within seconds!! AND You've got to be good to do that! LOL

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  @Zulisian2 жыл бұрын

  First time I met someone with Duchenne was nearly 3 years ago, this boy at one point told me he didn't want to live anymore because of his condition; I had such a huge bond with him and it was the first time he said something, where I didn't have an answer, I really didn't know what to say, I remember saying to him I'm going to give him some privacy because if I stayed in the room I'd have cried. I spoke afterwards with him, once I'd thought about his comments; and he had CAHMS involved. He used to be able to run, like Alex in this video, now he's in an electric wheelchair, loosing the ability to use his arms, and contemplating a breathing machine for overnight due to lowering breathing quality when asleep. He's so much stronger than me, I know I couldn't walk in his shoes, not for one minute. He beat his issues around wanting to die and never mentioned it again. He's in adult care now, I miss everything about him; I wouldn't wish Duchenne on anyone. I pray one day they find some sort of cure or ability to reverse damage done to all Exon deletions.

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  @dominicadominick48852 жыл бұрын

  ᑭᖇOᗰOᔕᗰ 👍

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  @kkrose65602 жыл бұрын

  Hi pixie Lott I am coming to see you on Saturday woooooh bye

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  @thefireflamethekingslayer41342 жыл бұрын

  Happy marry Christmas and happy December ma love😍

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  @julivelazquez71342 жыл бұрын

  She is very kind ♡♡ LET'S help guys!!

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  @stewwhitehead37772 жыл бұрын

  Absolute class act! What an amazing group!

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  @evastuart94072 жыл бұрын

  PIXIE LOTTTT

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  @kundangaming10812 жыл бұрын

  Repeat date successfully gym therapy

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  @umairebhat2 жыл бұрын

  My nephew has dmd, plz share any new info

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  @umairebhat2 жыл бұрын

  Have the trials ended?

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  @drpriyatosh2 жыл бұрын

  Where in India may get muscular dystrophy patient treatment sir

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  @bhagvanpote88642 жыл бұрын

  Best wishes for gene therapy innovation

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  @md.atiqulislamliton35692 жыл бұрын

  এই রোগ কি চিকিৎসাতে সুস্থ হয়?

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  @ramaboddanapalli9532 жыл бұрын

  Thank you joined from India mam

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  @Godnoddy3 жыл бұрын

  I also strong age 23 para shooter in shooting sport where we need lot of strength in hand. With duchene muscular dystrophy. This is extra ordinary. When my age 13 i suffer thigh bone fracture And now compete in shooting in standing position Please anyone raise my voice

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  @Godnoddy3 жыл бұрын

  I am para shooter in shooting sport in india, with dmd, bmd. I doing something extra ordinary. Can anyone help me

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  @Godnoddy3 жыл бұрын

  I am para shooter with duchene muscular dystrophy. Any one hearing me. Please help I want this gene therapy at any cost😔