Which MD? There are 50+ I only know about DMD/BMD not any of the other separate MD's. Cardiomyopathy has more genetic similarities to DMD than e.g. SMA, FSHD, etc.
Hello i have just launched my Muscular Dystrophy forums/site, i intend for the community to grow at a good rate once i get the word out.
I am going around on youtube and attempting to contact everyone with md i can find to try and grow the community, i know i have been looking for decent forums for years.
Breakthrough Muscular Dystrophy Treatment has been found!!!! Visit my channel to see the featured video of my 6 month progress! I am 22 years old with BMD & am showing more hope than anyone could have possibly imagined!
Im crying so hard. MY sons best friend (since he was 7) has this form of MD. He never rode a bike he never walkd or ran. He will be 17 soon and its just getting worst. God help us find a cure.
Our son was diagnosed with DMD at the tender age of 9 months, he is now 16 months and yet to learn how to walk. It really chews you up inside to know that when he does learn this precious gift will be taken away just as quickly.
Yesterday I took him to the doctor for his regular checkup. The worst thing is that you start to feel some "normality" in your life just before one of these visits only to have your world come crashing down around you, ready to be rebuilt for the next visit. God bless
I hear you, but maybe not? If steroids are given by 4yrs of age, ambulation can be extended into adolescence in some cases. In the next few years, we will so much more to pin our hopes upon. Take care.
@MrLilfrog Everyone can help finding a cure for Muscular Dystrophy. Please write worldcommunitygrid into the search field of Youtube to get further information.
Installing the Programm BOINC on your homecomputer, you donate unused computer capacity to researchers. One of the projects is trying to find a cure for Muscular Dystrophy. Please note that this is fundametal research. So, a cure cannot be expected too soon, unfortunately. BOINC is safe and has been working several years now.
We will as a world come together and kill this awful disease. WE WILL. I HAVE FAITH!!! I am still a firm believer in God and feel that gets me through my days w/out issues. DIE! DUCHENNE MUSCULAR DYSTROPHY!! I only say this because i have the disease.
It is good to have "fire in the belly". I trust you will raise a lot of awareness to support our scientists more who are coming together to work on a treatment . How could you do that? Are you good at art/computer art maybe and put this slogan somewhere in the frame? Wear it as a t-shirt ? Be interested to see how you use it . Too many of us get asked "how are you?" and without thinking we reply "fine thankyou".. but as they say the squeaky wheel gets more oil".
i have a duchenne too but now at the age of 16 I can still walk and manage myself to do some stuff around the house also in school and I dont have any learning disabilities,breathing difficulties,calf muscles enlargement,spinal cord malformation, I FEEL THAT IM LUCKY COZ I DONT HAVE THE ALL KINDS OF SYMPTOMS! I WISH THAT I COULD HAVE A LONG LIFE WITH MY WIFE AND KIDS IN THE FUTURE! believe it or not I play volleyball or do some hiphop moves but of course its limited! I HOPE THERES ALREADY A CURE
You have obviously done all the right things available to you. We need to push such treatment and determination for all boys and youths around the world. Can you post a video reply of your hiphop or volleyball? I've networked with some dudes who have wives and children. You sound like an interesting guy so I reckon Mrs Right should find you one day as you keep having fun with your wider peer group. I hope exon-skipping will provide increased strength, that's why we have to raise awareness.
I hope your memories grow more sweet than painful soon. I am sorry. This is too young even for DMD. Beta blockers for the heart are important but not many docs are up with the latest, we have to encourage them to network and go to the DMD conferences in order for them to care equally for all their patients.
my bf has MD. itz very sad. I would pay a million dollars for someone to find a cure. Levi if ur reading this i love you no matter wat other people think...ur very special 2 me an nothings ever going to change that.
My little brother has Duchenne MD and he is just starting to lose the use of his legs (at age 11), it is a very hard thing to go through and I can tell he is very scared. My mom is a part of Parent Project and we are praying for a cure! Please pray for my little brother.
i have a best friend whos slowly dying from duchenne and is now going downhill quite fast with his health...can anyone tell me the name of this song plz!
its worse in the uk,i lost my son four months before his 21st birthday,i had to fight doctors who starved him to death by reusing to fit a peg as he could no longer swallow.
I have the disease and am nearly 20. I am in good health and cannot believe it when I read of people my age dying from it. There has to be something seriously wrong in countries where this happens, certainly in the US the worlds most "powerful" nation.
My son was 20 last Friday and generally well too. There is a wide range of lifespans and quality of life depending upon care isn't there? I have known 13 and 16 yr olds to succumb but then also I have recently been communicating with affected persons in their late 20's. In terms of lab and clinical research we are definitely an underclass by comparison to high profile diseases in Australia.
My boyfriend has DMD. He turned 40 in March. He almost lost his life in 1988 but was put on a ventilator. He can still talk with the aide of a speaking valve, and can eat alright, and he still keeps a smile on his face. He is a fighter and will never give up. It may have a lot to do with your specific medical situation, but it also has to do with your will to live. Keep fighting and God Bless
omg i have a project on this disease nd im looking for a real life story with somebody who has it nd ive been googleing it 4 a good hour but i cant find nobody with it!!
A pill that can correct a wide range of faulty genes which cause crippling illnesses should be available within three years, promising a revolution in the treatment of thousands of conditions.
The drug, known as PTC124, has already had encouraging results in patients with Duchenne muscular dystrophy and cystic fibrosis. The final phase of clinical trials is to begin this year, and it could be licensed as early as 2009.
PTC124 does indeed look promising but it will only work in those boys who have a nonsense (or stop codon) mutation. 10-15% of affected persons have this type of mutation so that the missing protein "Dystrophin" may be produced and God willing improve function. I'd be over the moon to see 10% of our children strengthened. But our sons have a wide variety of mutations of the dystrophin gene - deletions, duplications etc. We need to keep investing in other promising scientific approaches.
My french boyfriend has Duchenne and he is 37 years old. At 20 years old he was connected to a breathing machine. In fact he uses 2 breathing machine, one of them is on the wheel chair and the other close to his bed.
He is a charming, intelligent and funny person who loves and enjoys life very much. He told me that the life hope for people with Duchenne might be 50 years old. I hope for more :).
The DMD pioneers are certainly positive role models by sharing their experiences. The medical fraternities in many countries and many affected individuals themselves don't share the same views of mechanical ventilation and social justice - including many western cultures WITH the resources. The best chance for the big picture, is to try to invest in research to make all stronger and we will have our menfolk in our lives for longer. Glad you have found someone special as he has, in you.
my son died from this illness in may he was 20 i have had no help from so called doctors he couldnt swallow but docs would not fit a peg i will NEVER get over this
I am so sorry. A very similar fate happened with my brother, who has a different disability, last month. I can understand doctors making quality of life/social justice decisions BUT I saw myself that the medical personnel had no idea about people with disabilities and how to communicate or relate to them, so how can they withdraw care in such ignorance? They say it was the disability that did it, but I disagree - they didn't know how to treat someone with severe physical disability.
My cousin had DMD. He was like my brother, only 1 year younger than me. when he was 21 he got a cold and went to the doctor. They gave him some pills and that was it. He couldn't cough because of his advanced case (as most with DMD do in their early 20s). I thought he needed a respirator. A few days later he suddenly died. No time to say a final goodbye. Too much phlegm in his lungs that he couldn't cough up. I swear, doctors in the US are Businessmen before they are Care Providers.
A loved this video ! I wanna know where can I download it. I´m a medical studant and I´m doing a work about DMD and this video is absolutely perfect for my work. Please somebody tell me where can I download it, please!!!
I thought it apt that Rory says "I never liked you" as they were holding hands towards the end...nice touch of homophobia! Glad to know you are well now. Has Darius Goes West been released yet in full?
ok, i have duchenne muscular dystrophy that is how its always been told to me, not "duchenne's" i believe either is acceptable. The video is a gd general public 1, but i do not think 25 is the "limit", i just turned 23, so i have made it to adulthood, like a great deal of friends i know with duchenne, i dont feel the end coming!, i always say late twentys to thirtys and even then im not going to give up!! also that music is too sad, we need a more upbeat message.
I agree the prognosis is a bit dated, but it depends on quality of care too etc. We lost a 13 yr old in this area 2 years ago. I know my son is aiming for 30+ but anybody's life is an open book and certainly have heard of 40+ men with DMD. Originally, Disney's "You'll be in my Heart" was used but that was sadder & this one is copyright free from Kids for Kids (PPMD) composer. Have you seen the Irish film, "Inside I'm Dancing"? Central character has DMD and it is a hoot.
I know I'm nitpicking here, but... There are hundreds, if not thousands of frenchmen who carry that name. Are all of them guilty of my sons "destruction"?
... It's named Duchenne's Muscular Dystrophy, after the french (?) doctor who was the first to "collect" the symptoms so typical of this disease into a diagnosis. Or at least that's how I've understood it.
By cure- a strengthening treatment(s). Children given steroids at age 4-5 for instance we observe running into mid-teens. My adult son's heart function was restored to normal after few months of taking meds. New drugs in human trials promise to strengthen as do non-embryonic stem cells and exon skipping trials - these will benefit mostly the young children with more muscle left. My hope is for the young boys. Not a contradiction -unfortunately for full benefit, it was not our time that's all.
Sorry mate, but you are not the intended audience - rather it is an emotional plea to the general public. This series of stills was adapted (with permission) from an American workplace giving campaign about 5 years ago, so the original was much older. I thought I would share it to highlight the need for greater investment in DMD/BMD. Do you think it is so offensive to families that I should remove it? I'd value your opinion.
Which MD? There are 50+ I only know about DMD/BMD not any of the other separate MD's. Cardiomyopathy has more genetic similarities to DMD than e.g. SMA, FSHD, etc.
rainrtr 8 months ago
Hello i have just launched my Muscular Dystrophy forums/site, i intend for the community to grow at a good rate once i get the word out.
I am going around on youtube and attempting to contact everyone with md i can find to try and grow the community, i know i have been looking for decent forums for years.
Matt
wwwLivingWithMDcom 8 months ago
Comment removed
wwwLivingWithMDcom 8 months ago
This has been flagged as spam show
Breakthrough Muscular Dystrophy Treatment has been found!!!! Visit my channel to see the featured video of my 6 month progress! I am 22 years old with BMD & am showing more hope than anyone could have possibly imagined!
DefyingDystrophy 1 year ago
1.-copy and paste
2.-paste it in 2 different videos
3.. hold breath for 10 secs
4.- look at your hand
rocket8r8 1 year ago
Im crying so hard. MY sons best friend (since he was 7) has this form of MD. He never rode a bike he never walkd or ran. He will be 17 soon and its just getting worst. God help us find a cure.
jerzeytpke 1 year ago
without the pills you can die i know because i have it myself
MrNikolaos09 1 year ago
Our son was diagnosed with DMD at the tender age of 9 months, he is now 16 months and yet to learn how to walk. It really chews you up inside to know that when he does learn this precious gift will be taken away just as quickly.
Yesterday I took him to the doctor for his regular checkup. The worst thing is that you start to feel some "normality" in your life just before one of these visits only to have your world come crashing down around you, ready to be rebuilt for the next visit. God bless
MrLilfrog 1 year ago
I hear you, but maybe not? If steroids are given by 4yrs of age, ambulation can be extended into adolescence in some cases. In the next few years, we will so much more to pin our hopes upon. Take care.
rainrtr 1 year ago
This has been flagged as spam show
@MrLilfrog Everyone can help finding a cure for Muscular Dystrophy. Please write worldcommunitygrid into the search field of Youtube to get further information.
Installing the Programm BOINC on your homecomputer, you donate unused computer capacity to researchers. One of the projects is trying to find a cure for Muscular Dystrophy. Please note that this is fundametal research. So, a cure cannot be expected too soon, unfortunately. BOINC is safe and has been working several years now.
Adamus70 1 year ago
my son has dmd it is just killingme
joeygolf86 2 years ago
We will as a world come together and kill this awful disease. WE WILL. I HAVE FAITH!!! I am still a firm believer in God and feel that gets me through my days w/out issues. DIE! DUCHENNE MUSCULAR DYSTROPHY!! I only say this because i have the disease.
cooldit1 2 years ago
It is good to have "fire in the belly". I trust you will raise a lot of awareness to support our scientists more who are coming together to work on a treatment . How could you do that? Are you good at art/computer art maybe and put this slogan somewhere in the frame? Wear it as a t-shirt ? Be interested to see how you use it . Too many of us get asked "how are you?" and without thinking we reply "fine thankyou".. but as they say the squeaky wheel gets more oil".
rainrtr 2 years ago
my younger brother has DMD. I made a video. check it out
should i add a link for donations through parent project? am i allowed to do that?
clicker009 2 years ago
i have a duchenne too but now at the age of 16 I can still walk and manage myself to do some stuff around the house also in school and I dont have any learning disabilities,breathing difficulties,calf muscles enlargement,spinal cord malformation, I FEEL THAT IM LUCKY COZ I DONT HAVE THE ALL KINDS OF SYMPTOMS! I WISH THAT I COULD HAVE A LONG LIFE WITH MY WIFE AND KIDS IN THE FUTURE! believe it or not I play volleyball or do some hiphop moves but of course its limited! I HOPE THERES ALREADY A CURE
dilan678 2 years ago
You have obviously done all the right things available to you. We need to push such treatment and determination for all boys and youths around the world. Can you post a video reply of your hiphop or volleyball? I've networked with some dudes who have wives and children. You sound like an interesting guy so I reckon Mrs Right should find you one day as you keep having fun with your wider peer group. I hope exon-skipping will provide increased strength, that's why we have to raise awareness.
rainrtr 2 years ago
=)...you really are lucky!!... GBY!!
macalita 2 years ago
@dilan678 are you sure you don't have Becker?
cooldit1 1 year ago
i didn't know much about duchenne muscler dystrophy before i researched this disease in biology class.
i feel so sad about they cannnot live long. i hope some medicine can help them to live in the future...
arashi3104amnos 2 years ago
this is so sad : c
LilyZou2424 2 years ago
Well im a carrier for this yeah it does suck but it will be ok
mizscola 2 years ago
I have duchenne but its going well but i hate it to of course
SecretYoungLink007 3 years ago
I have muscular dystrophy it sucks /:
14sadgirl 3 years ago
my 7 year old brother has Duchenne :'(
123becky3218 3 years ago
Comment removed
raphee13 3 years ago 3
I hope your memories grow more sweet than painful soon. I am sorry. This is too young even for DMD. Beta blockers for the heart are important but not many docs are up with the latest, we have to encourage them to network and go to the DMD conferences in order for them to care equally for all their patients.
rainrtr 3 years ago
if hes at the age 12 i bet hes in a wheelchair right now right??
yep ive did my research
kajin011 3 years ago
i was 14 when i stopped walking.
cooldit1 2 years ago
I have a friend with DMD who just turned 18. He is doing things now that he never thought he would be doing at this age even with DMD.
dariusgoeswest 3 years ago
my bf has MD. itz very sad. I would pay a million dollars for someone to find a cure. Levi if ur reading this i love you no matter wat other people think...ur very special 2 me an nothings ever going to change that.
1Prep2Rockerz 3 years ago
My little brother has Duchenne MD and he is just starting to lose the use of his legs (at age 11), it is a very hard thing to go through and I can tell he is very scared. My mom is a part of Parent Project and we are praying for a cure! Please pray for my little brother.
kjdavis88 3 years ago
i have a best friend whos slowly dying from duchenne and is now going downhill quite fast with his health...can anyone tell me the name of this song plz!
kitchy831 4 years ago
its worse in the uk,i lost my son four months before his 21st birthday,i had to fight doctors who starved him to death by reusing to fit a peg as he could no longer swallow.
rubys200777 4 years ago
I have the disease and am nearly 20. I am in good health and cannot believe it when I read of people my age dying from it. There has to be something seriously wrong in countries where this happens, certainly in the US the worlds most "powerful" nation.
Koeny 4 years ago
My son was 20 last Friday and generally well too. There is a wide range of lifespans and quality of life depending upon care isn't there? I have known 13 and 16 yr olds to succumb but then also I have recently been communicating with affected persons in their late 20's. In terms of lab and clinical research we are definitely an underclass by comparison to high profile diseases in Australia.
rainrtr 4 years ago
My boyfriend has DMD. He turned 40 in March. He almost lost his life in 1988 but was put on a ventilator. He can still talk with the aide of a speaking valve, and can eat alright, and he still keeps a smile on his face. He is a fighter and will never give up. It may have a lot to do with your specific medical situation, but it also has to do with your will to live. Keep fighting and God Bless
jaclynloveskenny 3 years ago
wow he has lived tht long..thts great
omg i have a project on this disease nd im looking for a real life story with somebody who has it nd ive been googleing it 4 a good hour but i cant find nobody with it!!
kajin011 3 years ago
A pill that can correct a wide range of faulty genes which cause crippling illnesses should be available within three years, promising a revolution in the treatment of thousands of conditions.
The drug, known as PTC124, has already had encouraging results in patients with Duchenne muscular dystrophy and cystic fibrosis. The final phase of clinical trials is to begin this year, and it could be licensed as early as 2009.
gevork2007 4 years ago
PTC124 does indeed look promising but it will only work in those boys who have a nonsense (or stop codon) mutation. 10-15% of affected persons have this type of mutation so that the missing protein "Dystrophin" may be produced and God willing improve function. I'd be over the moon to see 10% of our children strengthened. But our sons have a wide variety of mutations of the dystrophin gene - deletions, duplications etc. We need to keep investing in other promising scientific approaches.
rainrtr 4 years ago
Comment removed
cooldit1 2 years ago
My french boyfriend has Duchenne and he is 37 years old. At 20 years old he was connected to a breathing machine. In fact he uses 2 breathing machine, one of them is on the wheel chair and the other close to his bed.
He is a charming, intelligent and funny person who loves and enjoys life very much. He told me that the life hope for people with Duchenne might be 50 years old. I hope for more :).
elye02 4 years ago
The DMD pioneers are certainly positive role models by sharing their experiences. The medical fraternities in many countries and many affected individuals themselves don't share the same views of mechanical ventilation and social justice - including many western cultures WITH the resources. The best chance for the big picture, is to try to invest in research to make all stronger and we will have our menfolk in our lives for longer. Glad you have found someone special as he has, in you.
rainrtr 4 years ago
my son died from this illness in may he was 20 i have had no help from so called doctors he couldnt swallow but docs would not fit a peg i will NEVER get over this
rubys200777 4 years ago
I am so sorry. A very similar fate happened with my brother, who has a different disability, last month. I can understand doctors making quality of life/social justice decisions BUT I saw myself that the medical personnel had no idea about people with disabilities and how to communicate or relate to them, so how can they withdraw care in such ignorance? They say it was the disability that did it, but I disagree - they didn't know how to treat someone with severe physical disability.
rainrtr 4 years ago
My cousin had DMD. He was like my brother, only 1 year younger than me. when he was 21 he got a cold and went to the doctor. They gave him some pills and that was it. He couldn't cough because of his advanced case (as most with DMD do in their early 20s). I thought he needed a respirator. A few days later he suddenly died. No time to say a final goodbye. Too much phlegm in his lungs that he couldn't cough up. I swear, doctors in the US are Businessmen before they are Care Providers.
CarlosSanchez1020 4 years ago
That is so sad... I'm studying DMD right now for medical school. I sure wish we could find a cure for this. I have faith.
ihatecheaters 4 years ago
A loved this video ! I wanna know where can I download it. I´m a medical studant and I´m doing a work about DMD and this video is absolutely perfect for my work. Please somebody tell me where can I download it, please!!!
MireliFBeline 4 years ago
i totally diagree with patroels... i have SMA and ive lost alot of friends from DMD everyone should know about this disease.... love this vid....
wh33lz81 4 years ago
I thought it apt that Rory says "I never liked you" as they were holding hands towards the end...nice touch of homophobia! Glad to know you are well now. Has Darius Goes West been released yet in full?
rainrtr 4 years ago
ok, i have duchenne muscular dystrophy that is how its always been told to me, not "duchenne's" i believe either is acceptable. The video is a gd general public 1, but i do not think 25 is the "limit", i just turned 23, so i have made it to adulthood, like a great deal of friends i know with duchenne, i dont feel the end coming!, i always say late twentys to thirtys and even then im not going to give up!! also that music is too sad, we need a more upbeat message.
iangriff2007 4 years ago
I agree the prognosis is a bit dated, but it depends on quality of care too etc. We lost a 13 yr old in this area 2 years ago. I know my son is aiming for 30+ but anybody's life is an open book and certainly have heard of 40+ men with DMD. Originally, Disney's "You'll be in my Heart" was used but that was sadder & this one is copyright free from Kids for Kids (PPMD) composer. Have you seen the Irish film, "Inside I'm Dancing"? Central character has DMD and it is a hoot.
rainrtr 4 years ago
yep i have, laughed my head off lol, sad ending tho.
Yes quality of care is very important. I had a scare at 16, but my care is great from my parents.
iangriff2007 4 years ago
"And they will be destroyed by... Duchenne"
I know I'm nitpicking here, but... There are hundreds, if not thousands of frenchmen who carry that name. Are all of them guilty of my sons "destruction"?
... It's named Duchenne's Muscular Dystrophy, after the french (?) doctor who was the first to "collect" the symptoms so typical of this disease into a diagnosis. Or at least that's how I've understood it.
So: Not Duchenne M.D. but Duchenne's M.D.
Patroels 4 years ago
Raintr asks: Do you agree that our sons go too quietly in the end (and as they would choose to) if nobody else knows about a mother/father's pain?
I honestly don't understand that question, please rephrase :-)
Patroels 4 years ago
I have this myself...
And I have to ask, what the hell is your point?
How is there honestly realistic hope? You contradict that because you said there was no cure just before.
-_-.
Aestarus 4 years ago
By cure- a strengthening treatment(s). Children given steroids at age 4-5 for instance we observe running into mid-teens. My adult son's heart function was restored to normal after few months of taking meds. New drugs in human trials promise to strengthen as do non-embryonic stem cells and exon skipping trials - these will benefit mostly the young children with more muscle left. My hope is for the young boys. Not a contradiction -unfortunately for full benefit, it was not our time that's all.
rainrtr 4 years ago
Do you agree that our sons go too quietly in the end (and as they would choose to) if nobody else knows about a mother/father's pain?
rainrtr 4 years ago
Finally I was allowed answering (YouTube claimed that my answer held an E-mail adress or an URL in it... WTF?)
What I'm trying to say is: Don't hurt those families that are already in pain!
Patroels 4 years ago
Don't remove it, change it!
Patroels 4 years ago
As a father of a son with DMD, I find this in poor taste: Don't play on other parents feelings, try informing them instead.
Please try again and when you do, try ending the "please help us" with a "!" rather than a "?"
Patroels 4 years ago
Sorry mate, but you are not the intended audience - rather it is an emotional plea to the general public. This series of stills was adapted (with permission) from an American workplace giving campaign about 5 years ago, so the original was much older. I thought I would share it to highlight the need for greater investment in DMD/BMD. Do you think it is so offensive to families that I should remove it? I'd value your opinion.
rainrtr 4 years ago