Added: 4 years ago
From: iangriff2007
Views: 58,856
Sort by time | Sort by thread (beta)

Link to this comment:

Share to:
see all

All Comments (218)

Sign In or Sign Up now to post a comment!
  • We need a cure for DMD !!!!!!!!!!!

  • Hey Ian-

    Thanks for making this video. I recently learned about the existence of DMD via a documentary and am trying to learn more about it. I'll be sure to check out the rest of your uploads.

  • @rossiferous You're welcome :). Thanks for commenting and all the best.

  • I notice the differences my nephew has this disease and I just wish he had thie opportunity when he was first diagnosed. he is wheelchair bound and unable to feed himself...

  • @530BigBen I'm sorry your nephew has this. I understand because I'm a full time wheelchair user and can't feed myself either well I can barely eat anyway. It definitely well be cured one day! Hang in there, I know it's hard and takes over your whole life. hugs

  • Thank you for sharing your story! Together those of us with Muscular Dystrophy can help raise awareness about this muscle disorder! Please check out my video about my blog about living with Beckers Muscular Dystrophy!

  • @mybeckersstory you're welcome :) All the best with your video!

  • I LOVE how you have a pepsi in your video that made me laugh :) and i LOVE how you said "ill live to whatever i live to" :-)

  • @MrHodgson94 Thanks a lot my friend, Have a rewarding time filming and all the best!

  • You are an inspiration to me

  • Do you know if there is going to be a cure ?

  • @xkollia As of yet there's no cure but within a few years absolutely definitely there'll be a cure

  • @iangriff2007 Thanks for the information! :) Can you ask you something else ? My brother is 12 and he has duchenne muscular dystrophy, if there'll be a cure, will help him ?

  • @xkollia Well if a cure is found it would help everyone, but it's not here yet, really do hang in there though, it will be cured but the timescale isn't nailed down.

  • @iangriff2007 Thanks for the information :)

  • Hi Iangriff,

    Thanks for posting this. I take care of someone who has DMD, and watching your video is kind of neat because it gives another perspective (And I can learn more about DMD and share this with my client). God Bless! :D

  • @punkqueentheresa You're very welcome. :) If you'd like to know more about DMD, then you can read my recently published book, DMD Life art and me. It's my autobiography written about the first 25 years of my life. Available at Amazon, the charity Action Duchenne in the UK and many more online stores in the UK!

  • @iangriff2007 I'll have to keep your book in mind for sure. :)

  • Thank you for sharing this. You are an incredibly strong young man to do this. God bless you!

  • @AuggieX1 Thank you!

  • Thank you for sharing this with the world

  • @zerdda Thanks very much

  • Great video...takes a strong person to talk about md the way you do

  • @steve1849 thank you very much

  • Would you think it is possible to try and... 'reduce' the speed it happens if you would get a muscle gain system, before it occurs?

  • @gdudea Like steriods? They are available and may get you 6-12 months extra use but as it does not treat the underlying genetic issues, DMD usually always wins. Long term steriod use really has nasty side effects, lowers bone density, stunts growth and height, delays puberty, affects behaviour, leaves many depressed. Other alternatives are being looked into, so this is being investigated.

  • @iangriff2007

    But once you have a formula (Steroids) You can alter it to get it better... Why not have the makers of Steroids do that?

  • @gdudea Well they are looking for better types but no amount of steriods will solve the genetic fault or underlying cause.

  • @iangriff2007

    Steroids is like a Muscle Medication, Look for the certain formula for the certain muscles...

  • @gdudea There is no formula, only the replacing of dystrophin will solve it and God will cure us

  • @iangriff2007

    The atom structure in the steroids.

    And please, don't bring religion into this.

  • @gdudea Steriods will never cure or fix DMD scientists are constantly working on this, creating better newer meds for those who want them. As for me my belief's are centered around faith. I was not intending to ram religion down anyones throat so please don't feel threatened.

  • @iangriff2007

    But it's a start. Or where it was. I didn't freak out be religion, I just didn't want to bring it up is all.

  • Do you go outside?

  • @toryroseiii Not very often, mainly for hospital appointments

  • 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 Just a note on this but BMD and DMD may have similar genetics but are far different in symptom rate and progression. This treatment hasn't yet been proven in clinical trials and its benefits and hidden dangers have not been throughly investigated. It's fantastic you've found many benefits and are feeling so much better, but it may not work for all. For those with DMD who want to try please do but you've been warned, also it has a several thousand dollar price tag.

  • hi! i'm from Russia! God bless u man! I hope u r OK

  • @wroo0m Thank you

  • Hey there....

    I am writing to see if you would be willing to offer some advice to a friend of mine with MD who wants to go to school, but does not know the best way to be able to use a computer.....If you are not willing, then God bless you, and we won't bother you again, if you are willing, please let me know..thanks...

    Tod

  • @TODnMO There are many ways to operate a computer, theres a mouse you can control with your head called a 'light mouse', theres trackball mice, I use a very small mouse. If it's a learning difficultly I'm not sure I'm the best person to ask. If you go to the PPMD website they might help you more, community (dot) parentprojectmd (dot) org

  • I am very sorry about your condition. But im glad that youre a strong survivor and you keep living as normally as possible. Great wishes. < 333

  • @RuthTheZombie Thank you

  • @iangriff2007 Youre welcome : 3

  • R U OKAY?

  • @johncena3357 I'm good

  • You poor little thing. I'm not trying to degrade you at all by saying that, but my heart genuinely goes out to you.

  • @Counterbrilliance Hi there thank you for your genuine care :) I get through my life through the power of Jesus Christ our saviour, I look at DMD in a new light now. Thanks again and many blessings :)

  • I can't find my inbox. Can message me yur email?

  • @Mitosynergy go here duchennemen.net16.net click contact us

  • I'm on a iPhone I don't see that option if I post my email can you delete the post? I do not want to give my email to the world but o wish to write to you.

  • @Mitosynergy i'll just message you, don't reveal your email

  • I'm new to this and want email you. Not post for every one to see.

  • @Mitosynergy oh right, look up the top of the page on the far right, click your user name and 'inbox', then click 'compose

  • Thank you for sharing. Can you email away drone here.

  • @Mitosynergy you're welcome. What do you mean in regards to email?

  • Hey Ian, I have a rare form of MD and am 29. I just wanted to say good luck to you and keep fighting the good fight. There's a Fall Out Boy song that has a rockin' line for us, "sugar, we're going down swinging!" Hehehe. Anyways, just wanted to show my support for you and your video and wanted to say hi from the USA. Good luck Ian!

  • i got DMD myself it is the worst thing i know in my life

  • @MrNikolaos09 Hi there my friend, I know how bad it is to go through DMD. Do you have a hobby to take your mind off things?

  • The specialist in holidays for disabled in seaside resort Hua Hin, Thailand with wheelchair accessible beaches. Adapted holiday homes for handicapped people with free use of beach wheelchair and other aids / medical equipment.

  • God Bless u<3

  • @missassyme15 God bless you too!

  • As my video highlights my new autobiography DMD Life art & me is available to buy for international buyers. The book chronicles 25 years of my life battling with Duchenne Muscular Dystrophy, losing the ability to walk, to breathe for myself and become increasingly 'paralysed'. I've been in a helicopter, holidayed in the USA and met Sir John Major. Buy here international buyers; duchennemen.net16.net

  • You're amazing. What a great outlook you have. I'm sure you're an inspiration to many. Take care.

  • @mongungadin Thank you very much! Take care

  • you are amazing..... and very cute also.. i salute u for ur energy..

    i have lost 2 daughters to a rare disease called leighs syndrome, due to mitochonrial disorders.. i wish we find cure to allll the rare diseases . u r amazing my child.. may u live happy and healthy

  • @lotusfaisal Thank you very much! I'm really sorry about your loss, thats terrible, many hugs. I wish you all the best too!

  • I am a teacher who works with great kids with a wide range of abilities. Please take a look at the desktop desk on youtube. It helps provide access and opportunities for kids and adults in academic and social settings.

  • i am also has duchenne it makes my life hell its really sucks and i beat this surely

  • @mrlakshay0147 It is awful I know, hang in there though. Ian

  • Thank you! Producing, and posting video is no easy task. We live in an age when sharing ideas, research and most of all compassion with so many is readily done! I have a friend who has Duchenne. As I learn more of the condition, I feel my eyes being opened to the struggle---yet confident and persistent hope that is necessary for us all to get through each and every day. You might not realize it, but you are helping to speed up the day when this riddle is solved--thanks for your inspiration.

  • @MrTimSeeker You are very welcome :D I sincerely hope my small contributions do help end the worst effects of DMD.

  • Thank you for your post. I am researching this disease and I appreciate your frank and easy to understand description. Thank you for sharing.

  • @alphy79d You are most welcome. Happy to help.

  • My brother has duchenne...It really sucks, huh. You a part of Action Duchenne?

  • @jaygirl942 Sorry your brother has it too! Yes I volunteer with Action Duchenne.

  • Very informative and inspiring. Thank you very much for informing and educating the world.

  • @benthej Thanks !! Its a pleasure to inform :D

  • my little cousin has it, he was just diagnosed within the past year...hes only 7 :(

  • @flyeredup256 I'm sorry to hear your cousin has this disease but we've always gotta keep our hope alive.

  • you are an inspirational young man .. I have just found out that my nephew aged two has this desease its absolutely heart breaking and I am hurt that in britain we do not research this for free. I am doing as much fundraising as possible to help all of you with this heart breaking desease

  • @tinkadust Thank you for your kind comments. I'm so sorry to hear your nephew has this terrible disease. All the best in your fundraising efforts :)

  • @iangriff2007 you were very kind to get back to me . Again it is really nice to see you doing good and making others aware of this. I will let you no about the fund raising and hopefully in the future u can advise me, YOU ARE AN INSPIRATION

  • @tinkadust Thank you :)

  • Thank you for sharing. You are very brave. My friend died of the same disease after high school. I miss him still.

  • @OriginalMissKitty Thanks! So sorry to hear about your friend. Take care

  • @OriginalMissKitty You're welcome. I'm really sorry you lost your friend. Take care.

  • Brave guy - thanks for sharing.

  • @silvermonkeybs Thank you!

  • yes this disease is fatal in the long run. It is the # 1 genetic killer in teens in america most people who are diagnosed with this they only live until late teens early 20's because what it does it basicly overtakes all the volantary mucels and eventualy it gets to your heart and kills you

  • So is this disease fatal to you and everyone that has it?

    Or does it depend what varaity you have from the desease?

    Thanx Ragna

  • @ragnaroots If we're talking of DMD, currently yes this disease is fatal in 100% of cases. Until treatments are found this will remain the case. With MD in general then fatality does vary with each condition, but to reiterate Duchenne Muscular Dystrophy is 100% fatal currently.

  • @iangriff2007 Ok thanks for the info,

    I respect you don't think about tomorrow and think about today!!!

  • I'm working on a project for this and I just want to thank you for making this video!

  • Thank you.

  • i'm a 2nd year medical student. just wanted to say thanks for doing this bro.

  • @adnanmm thank you

  • If you remember me, I got a 110points out of 100 on my powerpoint about DMD :)

  • @96FUZZ well done

  • Hey, Im doing a powerpoint on this, and I was just looking for information and found this, and its nice to see people with 30 different versions of the disease, being, well, happy to talk to people and learn and to have fun. :)

  • I'm always happy to talk about my condition :) All the best with that presentation. Its not always so easy to deal with but hey life's all about enjoying what you got.

  • Im doing an assignment powerepoint on tnis, and Im amazed of it and how it works...GOD BLESS YOU.

  • God bless you my friend. You are an inspiration with your attitude. I was studying this disease and came across your video. Great information. God bless you all the days of your life. Pray for me as I pray for you.

  • God bless you my friend. Thank you so much for your wonderful comments. :D

  • i told people about my version of muscular dystrophy Becker also...we gotta let people know about it..way to go.

  • Thanks mate! Way to go too!

  • im doing a project on this and i appreciate your information and god bless you

  • Thanks for posting. My brother has DMD as well and he is almost 25 years old. We definitely don't talk about it because he's my best friend and I don't see him as being in a wheelchair. So it's nice to see what other people with DMD have to say about it.

  • You're welcome. All the best to you and your brother. God bless you :)

  • thank you for your video...you are truelly an inspiration i admire your realistic and optimistic view which could enlighten so many people out there to live in the present moment. i am studying medicine and your video has inspired and educated me as well :-) stay strong and bright you are a shining soul.

  • Thank you for your comments :) All the best and Godspeed studying medicine, one day you could be the best in your field :) Stay strong too, Take care

  • I can inform you, that everyone can help finding a cure for

    Muscular Dystrophy. Please write BOINC or worldcommunitygrid into the search field of Youtube or any search engine for further info

    Running the Programm BOINC on your homecomputer you donate unused computer capacity to researchers. One of their projects is about

    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.

  • i am sorry my dear. cheer up =)!!!STEPHEN HAWKING WAS BORN ON 1942 AND HE IS STILL MUCH ALIVE TODAY!!!i believe you can live over 40 and get married and have loads of children 10, 20 years down the road. you are an optimist and am sure god would help those who believe in themselves. I ve this cancer friend who lived beyond his life expectancy which doctors had predicted. NEVER NEVER LISTEN TO THE DOCTORS. THEIR WORDS ARE CRAP..!!! ya but in some scenario you should but, i believe in you. GO MAN.

  • Stephen hawkind does not have dmd, he has ALS. You don't seem to understand that with my disease living to 40 is a very RARE thing. In my video I said ill live to whatever i'll live too, and your right i'm an optimist but i'm also realistic. Thank you for you're comments. God is there for me I know this :)

  • Thanks so much for the video Ian!! Very interesting and very inspiring.. I liked your "Black cat" explanation, i have an exam tomorrow (im a medical student) and I think I might just use that!! Sounds like ur Welsh?? Im from the Valleys! Cant beat it :D All the best to you Ian x x x

  • Thank you and you are welcome. The sentence explanation is a very good one, makes a lot more sense. Best wishes on your exam! Yep I am Welsh, you certainly can't beat it. Take care.

  • Awesome!

    Where do you live? I think I have seen you before.

    Check out my channel!

  • Thanks, I live in south wales.

  • i need ur help i want to know how old you are because my brother of age 16 just died of this condiction and i would like to know how old u r so i can see if there was any thing else that was wrong he also had fatty liver and bipolar and a lot more stuff i am very soory for disterbing you but i would really like to know i am only 12 and thi is very important to me

  • Please don't be sorry, you aren't disturbing me. I'm 25 now. DMD has various levels of severity so im not really sure if perhaps there was something more. I'm so sorry to hear of your loss, my sincere condolenses.

    Take care.

  • Your video really helped me learn more about DMD, but also I feel so sorry that you and others have to suffer that :( Ugh, I really wish I could do something you know, I really do...

  • Thanks for your comment. There are many organisations that you could help out with if you wanted, theres ppmd and cure duchenne in the USA and Action Duchenne in the UK.

  • Hi! I am a physiotherapist and we are writing an essay about DMD. I found your vido very inspiring and I do believe God is watching over us all (: no matter what. Keep safe, God Bless (:

  • Thank you :) Good luck with your essay. God bless and take care!

  • my 26 year sister in indonesia also suffer this MD I guess. both her arms and fingers cant well fungction. i search the best curing, i heard there is a gene injection. is it good?

  • Hi, Sorry to hear your sister has MD, I hope you and her are feeling ok. In terms of a cure there are many possible treatments currently undergoing clinical trials but it may be a few years before we see them come to market. I'm not on any trials so I don't really know if they are good except to say they look very promiscing.

    Take care and God bless!

    Ian

  • I just graduated with my masters degree in occupational therapy and your video helped to have a better understanding of the condition. Sometimes we dont understand why bad things happened to good people but what it really matters is that God is in control and that He will use your testimony in this world to help others. keep the right attitude and never lose hope. You are not alone! God bless u always!!!

  • Well done on attaining the masters degree! I totally agree that God is there helping me get my message out there. His gifts have kept me going. I'm keeping hope and light is my armour :) God bless you too!

  • GOD?!! GOD! you say! GOD is the very reason why my brother has to suffer this disease! I dont believe in god anymore though it has made my own mother go even deeper into religion and lost her in that sense.

  • Wait one second, I suffer this disease too, God didn't give me this desease, blame the devil and the random chance of genetics. God is not the enemy here. I'm sorry you feel like this. Religion is helping me have the strength to keep living.

  • Interesting video mate. You have a great attitude towards things. keep up the good work informing others.

  • Thanks very much!

  • i feel for u man my best freined has md and it sucks to see him grow up and i love him like a brother god bless u

  • You are very special!!!...thanks for sharing your experience and being there!...

    THANK YOUUUU! ;-)

  • Thank you very much.

  • You are amazing! What an inspiration for so many.

    Check out the video I made about my family. My younger brother has DMD.

    You are someone to really look up to.

  • Thank you very much!

  • Thank you, I am truly humbled by listening to you. You are doing so much with your life whereas others, more able, physically, totally waste theirs.

    I wish you well intalking about this disease to help others understand and give hope to those that are in the same boat as you.

    Thank you again, for sharing this with us.

  • Thank you for the very kind words.

  • I have two sons with MD please god help us or should i say science. there should be a lot more awareness of this disease

  • God bless them!

  • You are an inspiration for us all

    Thank you pal!!

  • Thank you!

  • You young man are an inspiration!

    Hope to see more of you on YouTube - I'll be keeping an eye out!

    x

  • Thank you!

  • Wow. You are so brave. Thank you so much for posting this video. It helps so many people. Good luck, man.

  • Thank you!

  • i think its quite brave that you put this on you tube... im a med student and it was a nice video to help link my thoughts to DMD.. again, thanks!

  • your welcome. I'm glad it helped !

  • thank you!!! :-)

  • your welcome!

  • keep your heart on your goals i admire you. nice sponsor pepsi. God speed dude

  • thank you!

  • May god give you more and more strength and courage. You are in a challenge and you will win it, Im sure.

  • Thanks!

  • Again, you are amazing!!

    Thanks alot brother, you are inspiring!!

  • Thank you!

  • You are amazing and this video was incredibly helpful. Thank you so much. God's blessings to you always. :)

  • Thanks!

  • i'v been studing MD for a school project. thanks for making this video its helped alot. and good for you with you awesome additude, many people how have all thier mobilty arent as thank full as you.

  • im glad my vid helped you! Thanks for your kind comments!

  • I'm a medical student and I'd like to thank you so much for making this to help me. Please keep it up! Some live a whole life without having lived at all, so keep up your inspiring spirt brother.

  • Thanks, I'm glad to help!

  • Thank you! I'm doing a project on this for my nursing class and this was very helpful. Keep up hope, God bless you

  • Very good Luck with your project! I'm glad to help, thank you.

  • you made a great video. congratulations. i made a apresentation today about this and help. hope you make more videos and stay good. byebye (from brasil)

  • thanks!

  • You have done yourself proud!! My friend has just been told her baby has Duchenne Muscular Dystrophy. I never knew what it was until now. You have given me so much hope, I'm going to try and raise money for the London charity. Keep up the good wok and SMILES! X

  • Thank you very much! for your kind comments. Your friend must be going through hell after the diagnosis, pass on my regards, there is real hope on the horizon.

    Ian

  • this helped so much thank you

  • your welcome

  • Thanks for your video. We found out 4 months ago that my (now) 5 year old son has DMD. We have a lot of hope, but the news was hard to receive.

  • Sorry to hear of your diagnosis, I have alot of hope too. Hang in there

  • As a male nurse I am just trying to learn more about MD, your video helped, thanks. You have a great persona and a good looking face, perfect for making these vids, please make more.

  • Im glad my video has helped. Thanks for the kind words. If I get more time I'll make more.

  • Thank you for sharing. As a visual learner, your video helped make sense of MD better than anything I could have read in my Nursing texts. I appreciate your interest in sharing your experiences.

  • Your Welcome! I think visual learning helps more than textbooks.

  • My brother has duchenne muscular dystrophy. My uncle also had it but he died at the age of 18. My brother is still fighting the disease. He is now in a powered wheelchair. We are trying to get some type of medicine to get him stronger. It is said that gentamicin can create dystrophin in the muscles.