We connect a community of over 110,000 people living with one of 60 muscle wasting and weakening conditions, and all the people around them.
Living with a muscle wasting and weakening condition can be exhausting, stressful and lonely. With endless medical appointments, physiotherapy, treatments and respiratory support.
We share expert advice so people can live well now; fund groundbreaking research to understand the different conditions better and to lead us to new treatments; work with the NHS towards universal access to specialist health, and together, campaign for people's rights.
Together we are stronger. Join us. Our #MusclesMatter.
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!
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?
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
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!
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 🇬🇧 ❤
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
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.
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 ❤
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 ,
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 🥹🤍
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.
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.
Hello, for more information on treatment for polymyositis please visit our website here: musculardystrophyuk.org/conditions/polymyositis-pm-and-dermatomyositis-dm/treatment
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.
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…
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.
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 info@musculardystrophyuk.org. 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
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 info@musculardystrophyuk.org
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
Hi Anjani, please contact our info team on info@musculardystrophyuk.org for research updates visit the research section of our website: www.musculardystrophyuk.org/research
