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The daily life with Limb-girdle Muscular Dystrophy Type 1F - Chapter 1 

Conquistando Escalones Italia ODV
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Coinciding with the arrival of September 30th, World Day of Limb-girdle Muscular Dystrophies, we have launched the first chapter of what pretends to be a series of practical examples on what is to live day by day with Limb-girdle Muscular Dystrophy, a group of degenerative diseases that make it impossible to perform many tasks, although at first glance, until the stage that takes you to a wheelchair, it may seem that nothing happens to you.
Our family has Limb-girdle Muscular Dystrophy 1F, which unique genetic mutation in the world, at the same time that makes us suffer from it, immunizes us against AIDS. An international group of researchers is looking for a cure for us and millions of people. We have formed the Conquistando Escalones Association to raise the necessary funds to get it.
www.conquistandoescalones.org
Luminous Rain di Kevin MacLeod è un brano autorizzato da Creative Commons Attribution (creativecommon...)
Fonte: incompetech.com...
Artista: incompetech.com/

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18 сен 2024

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Комментарии : 17   
@sunitkushwaha4922
@sunitkushwaha4922 Год назад
Best explanation of limb gridle. Love you both for making this video
@delhikilalli
@delhikilalli Год назад
I'm also suffering LGMD.
@bernardjordaan9925
@bernardjordaan9925 Год назад
I want to tell you my story, well, a short version. Hi I'm bernard i live in South Africa , im 18, and i have LGMD , around 6 months ago i went to go see a heart doctor(forgot the name of it) and he told me that my heart has about 35% function left and he told me i should visit him in 6 months time. 6 months went by, and i went to see him about 2 weeks ago. He told me that i have only 20% hart function left. My parents are scared for me but im....honestly... i dont know how to feel. I know exactly how you feel. Everyday tasks are hard and you need help woth everday tasks. But i envy you.
@LGMDVlog
@LGMDVlog 5 лет назад
Mee too suffering from LGMD type, but DMD patient survive is so complicated friend,, Search for Myopathy lot of kid's suffering from DMD.. I hope one day we will be faster than light
@ruhanikaverma3632
@ruhanikaverma3632 5 лет назад
LGMD Vlog a
@prasadreddy8779
@prasadreddy8779 Год назад
I have sufferred Lgmd, I am from india, Andhra Pradesh
@torpegangofficial3736
@torpegangofficial3736 6 лет назад
Hi. I am from nepal and I am suffering from Becker muscular distrophy
@siddantd256
@siddantd256 2 года назад
O
@siddantd256
@siddantd256 2 года назад
In which place in Nepal and how old r u
@johnbritto2774
@johnbritto2774 2 года назад
Hey hi i am from india lgmd 2b
@amitkumartyagi1856
@amitkumartyagi1856 2 года назад
Any treatment of dmd
@conquistandoescalonesitalia
@conquistandoescalonesitalia 2 года назад
We are sorry but we are dedicated exclusively to Limb-Girdle Muscular Dystrophy 1F/D2
@sahiljindal7274
@sahiljindal7274 2 года назад
lgmd2a
@conquistandoescalonesitalia
@conquistandoescalonesitalia 2 года назад
Hi, we are an association of LGMD1f patients. You can contact LGMD2A association for your request, I suggest you Coalition to Cure Calpain 3 (info@curecalpain3.org), Associazione Italiana Calpaina 3 (info@aica3.org) and Beyond Labels & Limitations (beyondlabelslimitations.com/contact/)
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