End Duchenne: Time is Ticking

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Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy

Күн бұрын

Пікірлер: 104
@JuanGarcia-jr3ij
@JuanGarcia-jr3ij 3 жыл бұрын
2021 born 2006 he still here. Thank you.
@gracewill7494
@gracewill7494 10 жыл бұрын
My younger cousin has Duchenne, and though much money has been raised for research, it is still very likely that he will die when he gets to be a young adult. This is a terrible disease and I pray for anyone that has it or knows/loves someone else that does.
@deevillanueva9007
@deevillanueva9007 6 жыл бұрын
Grace Addison my son was just diagnosed I'm beyond grief ..
@cutedpanda00
@cutedpanda00 5 жыл бұрын
@@deevillanueva9007 i have musclular dystrophy beckers i hate it
@Gornodd
@Gornodd 10 жыл бұрын
I am learning for my final exam in medical science in munich and stumbled over this video. Ill have too chose a topic for my doctors degree in research. Im highly interested in genetical deseases and frankly im so moved by this video that I so very much want to help.
@JamesIvanFernandez
@JamesIvanFernandez 4 жыл бұрын
How are you now? I hope you are now a doctor.
@UmabrasileiranaAmerica
@UmabrasileiranaAmerica 2 жыл бұрын
I learned about this video in my Anatomy and Physiology class, what a touching subject! As a healthcare worker and going towards my nursing degree, all I can say is that I emphasize with you all, and may God bless each one of you.
@LatishaWright-em6se
@LatishaWright-em6se Жыл бұрын
,
@shesakillerqueenxx
@shesakillerqueenxx 10 жыл бұрын
Thank you for providing this video - I am a graduate nursing student studying for my boards and wanted to learn a bit more about this diagnosis. You have helped me to better understand the struggles a family with a child that has muscular dystrophy has to face. I hope to use this knowledge in my practice as a nurse. God Bless both of your families...never stop working towards a cure.
@meldyl96
@meldyl96 11 жыл бұрын
My son was named Dylan too. Praying for your family and the cure.
@ShakSterTV
@ShakSterTV 11 жыл бұрын
We need to share this with the world!
@sharonc8138
@sharonc8138 5 жыл бұрын
I’m glad I found your channel. I was diagnosed with Myotonic Muscular Dystrophy Type 1. All my siblings have it and sadly before we were diagnosed my sister passed on to her two children and I’m positive my daughter was the one of my kids that received the unstable gene.
@youtuubechannell
@youtuubechannell 4 жыл бұрын
All I can say is that stay strong, god give you strength and hope, I pray your children get good treatment..
@finley9045
@finley9045 7 жыл бұрын
My brother has Duchenne I know how you feel it's heartbreaking
@nickn7151
@nickn7151 5 жыл бұрын
Emily Lovely my brother also has Duchenne. As a elder brother I know how hard it is.
@youtuubechannell
@youtuubechannell 4 жыл бұрын
How's he now?
@HighTen_Melanie
@HighTen_Melanie 9 жыл бұрын
Remembering my friend James who had DMD he passed away at just 22.
@rockinshanel
@rockinshanel 2 ай бұрын
😢
@HanifKhan-ui7ht
@HanifKhan-ui7ht Жыл бұрын
My grandson is 10 years old he have DmD he cannot walk please pray for him 🙏
@jakemcl07
@jakemcl07 5 жыл бұрын
I have this and my life is amazing
@youtuubechannell
@youtuubechannell 4 жыл бұрын
You're the strongest, I hope you get cured as soon as possible. Could you tell me something about you
@uberhaxornovagentwo
@uberhaxornovagentwo 9 жыл бұрын
man like im 15 i cant walk but i can still move freely no assistance yet except walking
@frederichchaplin912
@frederichchaplin912 9 жыл бұрын
+Mr. WHEELZZY| I have the disease, too. How's life like now? Mine is just filled with depression.
@ghoto_777
@ghoto_777 3 жыл бұрын
Are you okay?
@giallorossosempre9009
@giallorossosempre9009 Жыл бұрын
Carissimo come va? aggiornaci
@youtuubechannell
@youtuubechannell 4 жыл бұрын
My brother had DMD and died at 20, wanna know what's the possibility of this disease to be carried in next generations. Please help 🙏
@jesss1561
@jesss1561 3 жыл бұрын
The DMD gene is passed to next generation with likelihood of 50%. As female, you are a carrier of DMD with 50% likelihood. Therefore, for your male child to have it the likelihood is 50%x50% =25%. Your female child is a carrier with equal probability of 50%x50% =25%.
@vedantg.4794
@vedantg.4794 6 жыл бұрын
my friend in california gets treatment in a stanford study
@AnnetteMurphyger
@AnnetteMurphyger 6 жыл бұрын
Good short and very positive documentary!
@lissa4922
@lissa4922 3 жыл бұрын
I wonder where they are now, and hope everyone in the comments is fairing okay especially during this pandemic and having DMD
@rubysaini173
@rubysaini173 7 жыл бұрын
my son has same symptoms of muscular dystrophy tests of dmd has send to u.s.a pls gys pray for my son
@sumitbajpai544
@sumitbajpai544 4 жыл бұрын
What's the cpk level?
@rubysaini173
@rubysaini173 4 жыл бұрын
@@sumitbajpai544 41 exon is deleted
@sumitbajpai544
@sumitbajpai544 4 жыл бұрын
It's between 50 to 300
@curioussoul3409
@curioussoul3409 2 жыл бұрын
@@rubysaini173 my son also diagnosed with this 41 exon
@kriskriskk
@kriskriskk 6 жыл бұрын
We all with you, I am heading an NGO called mobility in dystrophy (MIND), based in Kerala ,a state in India.identified more than 100 Dmd and BMD....Krishna....
@عبدالسلامحسو-ذ1غ
@عبدالسلامحسو-ذ1غ Жыл бұрын
ابني مصاب بمرض الحثل العضلي نمط دوشين ويحتاج الى مساعدة وعلاج قبل ان يتدهور الحالة كيف لكم أن تساعدوه نحن في سورية
@عبدالسلامحسو-ذ1غ
@عبدالسلامحسو-ذ1غ Жыл бұрын
مرحبا ابني مصاب بمرض الحثل العضلي نمط دوشين ويحتاج الى مساعدة وعلاج قبل ان يتدهور الحالة
@UnsuccessfulINSAAN
@UnsuccessfulINSAAN 3 жыл бұрын
🙂🙂i want to Ask god...why we get this disease 😔 ...And the science why can't find it's cure properly 😐😐 ..... I want to do research on my self ....What we can do .... give me some fund .....
@Kblessing-jg
@Kblessing-jg 3 жыл бұрын
My Son is recently diagnosed with Duchenne here in Uganda. It’s hard to believe that he can’t heal and live longer. 😭😭 everyday I die softly more so if I see him falling down on his own, he’s full of wounds. I just got to know about this genetic illness. Any advice, on how to take care of my 7yr old boy😢
@andreachristine2419
@andreachristine2419 2 жыл бұрын
Hold your son and love him every minute. I'm so terribly sorry your son has this 😔🥺 please make sure he is getting the right type of early intervention he needs to live a long fulfilling life. There is going to be cure one day. I pray your son lives to see that day. Bless you and your son.
@andreachristine2419
@andreachristine2419 2 жыл бұрын
Take him to a specialist as soon as you can who's familiar with DMD and it will help you. You may need to travel far to get the right help but look up resources near you that can point you in the right direction.
@Kblessing-jg
@Kblessing-jg 2 жыл бұрын
@@andreachristine2419 Do you know about Post Stem cell Therapy? It's in India. I have been watching it on KZbin and I see it helps children with DMD. My heart desires so much to visit them am praying to God that he grants me with money so I can try on them.
@andreachristine2419
@andreachristine2419 2 жыл бұрын
@@Kblessing-jg that breaks my heart to hear. I wish I could help. Do they have any financial help resources for it India? I would call and find out what you can do to get the help you need.
@shawnamarie5771
@shawnamarie5771 8 жыл бұрын
I'm 29 with dmd.
@shawnamarie5771
@shawnamarie5771 8 жыл бұрын
Yes I'm very sure it's a disease it's weird that I got it my doctors are surprised
@shawnamarie5771
@shawnamarie5771 8 жыл бұрын
+praNNkii duchenne
@kantilalbhanushali7572
@kantilalbhanushali7572 7 жыл бұрын
Shawna Blueyes HI I'm Kantilal Bhanushali from India I like to inform you that we got good results in Dmd muscular dystrophy patient case for further information call me or whatsapp on 91 9428056321 or 91 9322303271
@tonyssimbwa8529
@tonyssimbwa8529 5 жыл бұрын
Hi Shawna, my 3 year old son has.been recently diagnosed.with DMD and we are.truely scared about it, please I wish to know how you are taking care of your self,.may.be .we can borrow ideas from you when it's.early.enough,. +256752837848 tonyssim@gmail.com
@varshapmzd1795
@varshapmzd1795 Жыл бұрын
Hlo
@Shyam_Abundance
@Shyam_Abundance 5 жыл бұрын
My twin children are suffering from this .... How to get treatment
@leobishabosi7588
@leobishabosi7588 8 жыл бұрын
please help my kids
@buhdji00
@buhdji00 11 жыл бұрын
Did you know for a cure for this disease I heard about PTC124 (Ataluren) Did you know anything about him? Say it is effective for the treatment of muscular dystrophy, but I do not know when it will be available in the market I'd like to know the latest news about this medication And I hope anyone who knows anything about this medication that helps me know the latest news and thanks
@evansdolyna7
@evansdolyna7 4 жыл бұрын
I heard something about light therapy that heal cells and dna...is this true?
@kusumyadav9592
@kusumyadav9592 7 жыл бұрын
I am a teacher.I earn 29000 rupees per month.my son is also having DMD. He's 6yrs old.How can i help my child.I feel so helpless
@Rajpootfamily_03w
@Rajpootfamily_03w Жыл бұрын
PlZ mujhy btain k kia is bemari main apny pairon k punjon py chlta hai mtlb airhi utha kr
@foodtherapy1230
@foodtherapy1230 Жыл бұрын
@@Rajpootfamily_03w yes aise chalte hai
@AnnetteMurphyger
@AnnetteMurphyger 6 жыл бұрын
Well in Ireland people are quite igmorant of this condition of MD in general and young kids are dying of MD expecially Duchenne
@gamingbosslittle5435
@gamingbosslittle5435 9 жыл бұрын
My Step Brother has DMD and is only 5 )-:
@AnnetteMurphyger
@AnnetteMurphyger 6 жыл бұрын
Staying on their feet as long as possible the best
@jamaicanjourney7
@jamaicanjourney7 8 жыл бұрын
Does girls get this disease?
@arndhellinger8276
@arndhellinger8276 8 жыл бұрын
Somtimes they do. But in Girls it's not fatal - they only get weak... :-(
@furzflamme
@furzflamme 8 жыл бұрын
No. They can have other Muscle Dystrophies, but not Duchenne-Type.
@voldemortsmom3600
@voldemortsmom3600 7 жыл бұрын
Bruce Wayne Girls could get it just not all of the effects it usually comes with.
@junbh2
@junbh2 7 жыл бұрын
+Bruce Wayne Does duchenne's cause infertility? Because if it's a sex-linked recessive like hemophilia, then a girl could have it if her dad had it and her mom was also a carrier. So I'm curious if girls just don't get it because boys with duchenne's don't live long enough in good enough health to have kids? Or if it's a more complicated inheritance than hemophilia.
@AnnetteMurphyger
@AnnetteMurphyger 6 жыл бұрын
Yes, that is correct as far as as I know females do not get Duchenne MD, but can have other types of Muscular Dystrophy.
@gamingbosslittle5435
@gamingbosslittle5435 9 жыл бұрын
And one who lives in swindon or is in swindon plz come to coate water on the 25 July 2015 dressed as a super hero to raise money fore DMD
@AnnetteMurphyger
@AnnetteMurphyger 6 жыл бұрын
So sad
@SuneFey
@SuneFey 7 жыл бұрын
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