« Living with DMD » What is life like with a rare disease like Duchenne muscular dystrophy?

Our Web-doc is available!
We follow the journey of three young people with Duchenne muscular dystrophy (DMD). Each view and share will serve to comfort those who suffer from DMD today and will help to heal future generations... Watch it here.
To learn more about Duchenne muscular dystrophy and rare disease, visit our web site, here:
www.laforcedmd.com

[@SUR3N_III]

I have DMD, I am 12 and I can still walk and even run for a bit. My doctor says that she is surprised because of how well I’m doing. Everyone with DMD deserves a better life

[@kusanchi3977]

@@sneapnation8826 i went through the same depressed state your going through. All i can tell you is that you should not waste life not doing anything. You will regret if you do like i did. Ik this prob won't help as much, but it nice to know that there are people going through the same thing you are going through. To be honest i still can't live with the fact that i might die early. It hurt so much because you don't even know what you did for you to be born this way. My dmd is not as strong as all the other causes but still prevent me from doing a lot of thing. Like my feet cramp very easily. Every once and a while my body just gives out of no where. (I just wanna state that this rarely ever happen but it scary cause i never see it coming.) I am 18 about to graduate from high school.

[@eminqeniyev4744]

@@kusanchi3977 l want to know,you still can walk?It is great.Are you doing exercises or fizioterapy.My son is also DMD,he is 12.What else you are doing,medicine,swiming,massage l want to know for future.Thanks before.Be always healty,strong and happy

[@eminqeniyev4744]

@@kusanchi3977 I want to know you can still walk?It is great.My son is also Dmd,he is 12.Are you doing exercises or fizioterapiya?What medicines you are taking?Be always strong,healty and happy.Thanks before

[@aadi_the__]

I'm 16 y/o boy I'll had the same disease it's called muscular dystrophy i don't care about school....i don't want to study... I'm very depressed nowadays what should I do

[@aadi_the__]

@@kusanchi3977 so bro how long have you had this disease ? Bro

[@zoenoel7431]

My younger brother is 15 with DMD and is thriving in his high school trade school, he’s wanting to become a programmer and he is doing well!

[@jimmytiger3686]

Me also suffering from muscular dystrophy and I'm wheelchair bound. I can realise the hardships and pain of patient and as well as family. I am 31 now and by the grace of Almighty Allah doing a job and living a happy life which i have given. From Pakistan

[@PBXAKSH09]

YOU USE ANY HEART MEDICINE YES OR NO

[@manishasharma9573]

My younger brother having dmd passed away last year on 29aug at the age of 15 yr 9 months 22 days.😢😢I missed my brother very much everyday💔💔he was very innocent and very closed to me,i was his secomd mother.I miss my brother very much😓😓🙏🙏

[@lorrainerobinson2742]

So sorry you lost your brother this disease is horrible ! I know you boys loved each other an had a unbreakable bond ! My grandson has dmd his sisters are crazy about him and are like little 'mamas" these boys are so physically limited . I saw your comment an had to give u my condolences young man ! May god bless u an ur family giving you courage to move forward an ease ur heartache an pain! Ur brother will 4 ever be a part of u an u will be blessed for the loving total care u gave him! ❤

[@loopymcgeee3939]

My co-worker has DMD. He has gotten his masters degree, has a family and a really good job. Its possible but I know he worked very hard.

[@TheDjRedmix]

tres beau video!!! Mon frere avait cette maladie lui aussi ainsi que mon oncle et l'enfant de ma cousine l'a presentement et tres bien daccord avec ce petit video!! Continuer comme sa !!

[@sanaayub6107]

Is such beautiful video. I'm also SMD 3 and wheelchair bound in Pakistan.

[@sm9029]

My brother is 33 living with DMD. 💕 Yes he is limited and often refers to himself as a house plant. But he is at home and manages with 24 hour nurse care.

[@kantilalbhanushali7572]

Power meditation is helpful for muscular dystrophy patients if he do power meditation every day two set then within a month he find relief in pain and improvements in body movement for further information please contact me on whatsapp [phone]

[@MG-yd3qd]

does he refer to himself as a houseplant because he just sits in one place all the time? :(

[@sm9029]

@@MG-yd3qd yeah. Unfortunately. Because he is unable to be moved.

[@PBXAKSH09]

@@sm9029 your brother use ventilator and heart medicine yes or no please tell me

[@PBXAKSH09]

@@sm9029 Your brother have any heart problem please tellme

[@JamesKerLindsay]

Thank you for uploading such a beautiful video. It really shows the different ways that Duchenne affects the life children and adults with the condition and their families. The one thing I would perhaps say is that while steroids can present a challenge for some children with autism spectrum disorders (ASD), this is not always the case. Our son is on intermittent steroids (10 Days On/Off) and has generally coped very well indeed with them. It is really worth speaking to a doctor about this.

[@dakota5134]

My older brother had this disease and died two days after his ECS graduation. ..he was only 18 and was my best friend

[@laforcedmd1848]

May his strength stays with you for ever.

[@makingmathsfunfor10th20]

I am worried about my cousin 😢 Rest in peace

[@rajnikumari3519]

Be strong

[@aadi_the__]

@@sneapnation8826 yeah maybe you're right btw i also had muscular dystrophy but i don't care about my studies but i was very depressed nowadays what should I do

[@aadi_the__]

@@sneapnation8826 you had the same disease?

[@kubasim1]

My older brother had DMD and my only wish whole life was to cure it somehow so we both could live normal lives but sadly he unexpectedly passed away few days ago at age 26 :( i Hope there will be something in future to cure this fatal disease so no more young people will die..

[@sybilelt]

How did he pass away like the symptoms? My brother also has dmd and he is 20 years old now

[@kubasim1]

@@sybilelt He started vomit blood unexpectedly in the middle of the night. We called ambulance and he went to the hospital. Hour later they called us that he passed away. Sadly no symptoms..

[@aadi_the__]

@@kubasim1 then what happen next.. i also had muscular dystrophy

[@kubasim1]

There were no symptoms.

[@PBXAKSH09]

@@kubasim1 your brother have any heart problem any eat any medicine tell me

[@rhonackimp]

I'm also a 32 patient with DMD and i gave birth to a boy who was also diagnosed with DMD and is almost 10yrs..life is not easy for the both us I was diagnosed with DMD at 11yrs and for my son at 3yrs Fortunately i can help myself stand and move on crutches but my son can't stand anymore

[@sierra6114]

I have BMD it is a bit slower but it is still fatal. I just recently found out and I'm scared but trying to stay strong.

[@kw5839]

I went school with a family of 7 boys. 5 of the brothers had Duchene.

[@saymyname_bruh157]

I got DMD to but im the lucky one because my is not that bad but going wors every day

[@christiansalminen3000]

I had 50% chance to have dmd im always glad that i didnt but my little brother did and that makes me sad

[@alfredodeleon9590]

My son also has DMD he is 13years old,since the pandemic we are not able to go hospital because we have no car,it's hard for us to travel be cause he cannot walk😢😢his body has scoliosis.we need help for his medication 🙏🙏🙏we are from Philippines.Godbless

[@delsychavez3415]

My little brother is 30 years old with DMD it's a hard life.

[@patriciahendler]

My son is 10 months old and it looks like he also has DMD, we are still waiting for the results of the DNA test. At the moment I don't know how everything will work in the future.

[@thatsmrsy2u]

@britneyandbaby should watch this

[@elizabethfox667]

I have two brothers who has this one of them is 14 and he can’t do anything and I have a 7 year old brother who is able to walk a bit

[@cindypalombo8528]

Dmd has made a mess of my son's life he needs infusion treatments and all becouse of a dr he has not been able to get his treatments at this time

[@bobipapy2404]

🙏

[@bathinaabhiram4713]

Sir pls say the way to give best treatment for this to my son.he is suffering.age 8yrs

[@reppinkhaan1519]

I have DMD and I got in a wealchair when I was 12

[@laforcedmd1848]

My son got his wheelchair at 10.

[@MuhammadDanangAsviyan]

I also suffer from Duchenne Muscular Dystrophy, 🥺 I am very sad

[@aadi_the__]

@@laforcedmd1848 I'm 16 year old boy i have same disease it's called muscular dystrophy i can't stand up i can't walk without support..but I don't go to school. I spend my time on my phone and watching TV it's okay?? because i don't want to study and i go outside sometimes with my wheelchair for some fresh air

[@SUR3N_III]

I can still walk for over 4 miles at 12, From my calculations I think I’ll start using wheelchair at 14

[@aadi_the__]

@@SUR3N_III oh but i also can walk but only for 2 miles 😂 then I'll fall down. Now i spend my time on my phone and watching TV i don't want to study... it's okay?

[@alexism.v.1016]

My brother had DMD. He died of dilated cardiomyopathy at age 8 during a surgery to realign his pigeon-toed feet. DMD is devastating.

[@alexism.v.1016]

Also, since dystrophin is such a vast protein throughout the human body, the only surefire (but very extensive and arguably near impossible) cure is to compensate for the enormous loss that the lack of dystrophin creates. I can't even fathom how that could be done. Unfortunately, anything else simply delays inevitable progression and death.

[@HighTen_Melanie]

Alexis M.V. I’m so sorry to hear about the loss of your brother.

[@alexism.v.1016]

@@HighTen_Melanie thank you, I appreciate it ^*^

[@mikeyshappylife4424]

I'm so sorry

[@pallavi5997]

Sir my son dmd Exon 48,50 h ishki medicine Kaiser milegi sir

[@kamendrasupriya1164]

Ka par hai mo no kya hai sirji

[@makingmathsfunfor10th20]

I wish scientist find a cure to this. no, not only this almost every thing in the world

[@jflsdknf]

Amen.

[@makingmathsfunfor10th20]

@@jflsdknf yes... My cousin is with dmd... I wish all my brothers and sisters get cured from every disease expecially cancers.

[@sajna5916]

My relative was diagnosed to be duchenne muscular dystrophy unfortunately he is a 6 years child 😔

[@adityatps8657]

Bro please contact me

[@mikeyshappylife4424]

😭😭😭😭😭💔💔💔💔💔

[@sveiniscute9101]

It's not the world end to get disabled baby.I was born undiagnosed

[@patriciahendler]

Also diagnosed with DMD? Cancer, diabetes and all other diseases can somehow be cured, unless they are neuromuscular diseases. These children have no chance. For the parents, it's the end of the world.

[@sveiniscute9101]

​@@patriciahendler Not DMD here.