Пікірлер

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  @MookieNone22 күн бұрын

  Who comes up with this shit???? I remember being asked to make up two diseases which was stupid and didn't have nothing to do with nothing, cuz the only thing I am seeing is people starving themselves to death by not eating, cthey can't sleep at night and need hard core opiods for knocking them out for sleep especially fetanol and are willing to get surgery to get a sleeping fix!

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  @deepakaswal2000Ай бұрын

  do you need graphic designer

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  @rhonackimpАй бұрын

  Is there a way anyone here can help me with my get wheelchairs at least..we really need them am from Uganda and we both have DMD 😢

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  @majidvlogs5711Ай бұрын

  So please

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  @majidvlogs5711Ай бұрын

  Can you halep me same problem for me

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  @rebeccabaker1066Ай бұрын

  Need to fix the microphone going in and out the whole time

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  @amanyirejoshua53862 ай бұрын

  This facts effected ones self esteem and attitude

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  @EmeraldMakesTapes2 ай бұрын

  My brother has dmd he uses a wheelchair his leg muscles stopped working around 5 years ago

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  @franciscocarlos79932 ай бұрын

  Hello! I learned about a new drug from ARTHEx Biotech that can greatly help people who have myotonic dystrophy. Do you have any predictions as to when this new drug will be available for purchase?

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  @rameshkannarameshkanna75223 ай бұрын

  Cure Dmd medicine please

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  @sarveshkumarpathak4 ай бұрын

  kzread.info/dash/bejne/k2eMrKSlhMifg5c.html

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  @michaelhodson30554 ай бұрын

  Hi 👋 how long did it take for you to get a diagnosis on what you had? I had a muscle biopsy done last January and I'm still waiting for the results but I think I could have LGMD

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  @ancutateodoragolban22834 ай бұрын

  This drug is so expensive.Is not ok it should be offered to those that need it because is such a rare desease and who can afford to pay 2,1million$?

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  @alwaysxetra32455 ай бұрын

  Is this the same abbot that wanted a kid to jerk it in front of him for "evidence"

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  @Speakmymind086 ай бұрын

  ❤

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  @DragonRiderElf6 ай бұрын

  thank you for making this! I am 15 and we recently discovered I have LGMD due to genetics (I’ve had it for a while but we didn’t know until it started affecting my hips as well). I genuinely appreciate you making this video!

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  @julieannegarfield31086 ай бұрын

  Thank you for covering Pompe disease. Being rare means very little information, so this is very much appreciated. John Foxwell is a leading light for Pompe Disease in the UK 🇬🇧 ❤

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  @tarun6119907 ай бұрын

  Hi one of my cousin also got same issue. Is there any treatment cure which doctor to visit we have met Neuro Ortho spine rhumeto etc. also saw a video where people with such condition get to worst in few years is it correct? How to prevent that

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  @Speakmymind087 ай бұрын

  Please remember no one is perfect I use this method for my whole life

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  @Speakmymind087 ай бұрын

  Hello Karen my name is Danny, I’m a 43 year old with lgmd I have 3 kids 2 boys and 1 girl Brad Shane and Zoe. I live with lgmg for a long time since I was born but I have to say you are a great person doing this.

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  @delphi24757 ай бұрын

  The best tip or advice I got & please bare with me, I might not say it as well as they did. But here goes. “ as our condition deteriorates & sadly we will lose things, physical abilities we rely on & cherish. Give yourself permission to grieve for the loss & then pull yourself together & try & see the funny side of it” it’s not always easy, but your entitled to a grieving period for the ability you can no longer do, like losing an old friend. Sadly we can often spiral into punishing ourselves for “feeling sorry for ourself, when we know others have it worse”. But that’s not a healthy. You are entitled to grieve, its healthy process. The only thing those of us with MD can try & control, is how we view our conditions. Positivity isn’t always easy, but as my consultant said “it’s the only control we have & is priceless in the way we deal with the losses & pains we will have” all the best ❤

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  @theumpteenthtime88548 ай бұрын

  "My right hand side is wasting away, and my left is as it has been for 20 years." I felt that one.

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  @sandhiyapalanisamy91908 ай бұрын

  Hello, Drs.. I doubt my 2.9 yr old son has it, as he shows gowers sign and muscle weakness.. he s such a loving human who deserves a healthy life.. yet to Check with Dr ,

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  @rawlivingwithdisabilities9 ай бұрын

  I have general Dystonia...so yes ... myotonia..😢

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  @KatieKempgaming10 ай бұрын

  So proud. Peter and Nancy were my very much loved Grandparents and there years of hard work definitely didn’t go unnoticed. To now have an award named after them and people who have this award given to them makes me so proud 🥹🤍

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  @bla116711 ай бұрын

  kzread.info/dash/bejne/oIp1waV-o8i2Z5c.html

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  @channel9r11 ай бұрын

  A useful range of views. Creatin does, in my experience, help with general muscle weakness in OPMD but has the effect of raising resting heart rate. So, it should be taken with care and maybe at a reduced dosage from the manufacturers recommended daily intake. As for a way forward with the condition; it would be useful if clinicians had awareness of the possible progression of the disease. Generally, in my view, they are happy to diagnose and then ignore until there is a crisis. On the topic of genetic counseling; I was only offered this after diagnosis which seemed to me to indicate a lack of understanding by the clinicians involved.

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  @brianlawson363 Жыл бұрын

  Just found out that I have CMT. THANK YOU FOR THIS GREAT VIDEO.

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  @Raxyroobear Жыл бұрын

  I have CMT Type 1A. I got diagnosed at age 11 and I'm 38 now. Had my first surgery to straighten my foot and ankle. :)

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  @laleshahqeldiyeva9343 Жыл бұрын

  God bless them! I wish cure for this disease will soon be discovered

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  @Rezzzzzzzzzz Жыл бұрын

  Has a son called Dylan and a daughter called Ella

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  @Rezzzzzzzzzz Жыл бұрын

  Ryan mulvey used to be my step dad lol

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  @ShahNawaz-kp3jn Жыл бұрын

  Sir my three disabled brothers suffering from disease Muscular Dystrophy please help us to survival of our life May God bless I'm from Pakistan

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  @MuscularDystrophyUK Жыл бұрын

  Hello, unfortunately as a national charity we can only provide advice for support services available in the UK. You could get in contact with the Muscular Dystrophy Registry of Pakistan (www.mdrpakistan.com/). Their purpose is to collate a disease registry rather than provide support, however, they may be able to signpost you to suitable support services locally.

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  @virendarrai6937 Жыл бұрын

  I have been suffering from muscle disorder POLYMYOSITIS.since last 6 years. What medicine will help me for recovery?

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  @MuscularDystrophyUK Жыл бұрын

  Hello, for more information on treatment for polymyositis please visit our website here: musculardystrophyuk.org/conditions/polymyositis-pm-and-dermatomyositis-dm/treatment

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  @batman-sr2px Жыл бұрын

  Does TRT help those with muscular dystrophy?

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  @MuscularDystrophyUK Жыл бұрын

  Hello, unfortunately as a charity we are not qualified to provide medical advice - please discuss with a GP or specialist who can advise appropriately on treatment and risks.

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  @kavyagonchikar9804 Жыл бұрын

  Hello sir i have lgmd, but I don't know which type. please suggest which test I have do

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  @gamaltaher9714 Жыл бұрын

  Thanks

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  @dawnellis4816 Жыл бұрын

  Well done to everyone x

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  @monicatirado763 Жыл бұрын

  I just watched the seminar and I find the BB-301 very promising for all the ones that we suffer of OPMD. My question is: in the US and Canada are already recruiting candidates to start the trials in humans. Will trials take place too in the EU? If so, where will they take place? I live in NL and I would like to volunteer. I am aware that in the US and Canada are a lot of people with OPMD but I have the feeling that we are also quite a lot of people affected in EU, the only issue is that a lot of people affected in EU are not officially diagnosed…

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  @MuscularDystrophyUK Жыл бұрын

  Hi Monica, Apologies for the delay in getting back to you. Benitec Biopharma who are running the study released this statement within a press release re expansion of the clinical trials "We continue to work with regulators globally to open additional sites in geographies outside of the United States." You can get in touch with them via the form on their website (benitec.com/contact-us/) to request further information.

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  @rosie2213 Жыл бұрын

  Myself and my son who is 11 both have Bethlehem and Ulrich. Hope you are doing well bertie.

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  @pauloneill9880 Жыл бұрын

  Nick being concerned just tells you he's a genuine bloke.

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  @ravir316 Жыл бұрын

  Please iam limb girdle muscular dystrophy please help me sir any treatment there please tell me

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  @pleasehelpme4361 Жыл бұрын

  Mujhe bhi muscular dystrophy problem lgmd 😩😩

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  @MuscularDystrophyUK Жыл бұрын

  Hello, if you are based in the UK and would like support, advice or information on living with LGMD please contact us on 0800 652 6352 or email us at [email protected]. If you are based outside the UK we have a list of international organisations on our website that you can contact for support: www.musculardystrophyuk.org/get-support/someone-to-talk-to/international-organisations

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  @floroma2820 Жыл бұрын

  Fatigue is tired, it’s not sleepiness

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  @MuscularDystrophyUK Жыл бұрын

  Hello, that is correct there are different definitions for fatigue and sleepiness as outlined at the beginning of Dr Hilton-Jones talk. If you require support with either fatigue or excessive daytime sleepiness as a result of living with a muscle-wasting condition and would like support or further information then please contact our helpline on 0800 652 6352 or email on [email protected]

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  @amrithraj5756 Жыл бұрын

  HOW DOES IT HAPPEN?

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  @MuscularDystrophyUK Жыл бұрын

  Hi Amrith, Becker muscular dystrophy is a genetic condition - it is caused by a mutation or mistake in the genetic code (DNA). In Becker muscular dystrophy, the mutation occurs in a gene called dystrophin, which is located on the X-chromosome. Dystrophin is important to maintain the integrity of the muscles, so when it is smaller or less abundant than normal, the muscle fibres gradually break down and the muscles slowly become weaker. For more information please see our website: www.musculardystrophyuk.org/conditions/becker-muscular-dystrophy

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  @anjanikumar3624 Жыл бұрын

  I am suffering from lgmd please make me informed about treatment

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  @MuscularDystrophyUK Жыл бұрын

  Hi Anjani, please contact our info team on [email protected] for research updates visit the research section of our website: www.musculardystrophyuk.org/research

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  @nillagregorini4192 Жыл бұрын

  I tempi per la cura

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  @stephenjames4937 Жыл бұрын

  Hello, Raj. Long time no see.