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! HOPE THERES ALREADY A CURE
Thank you for the work you do on myotonic dystrophy. My daughter Kayla was born in July 2005 with the congenital form of the disease with 2500 CTG repeats. She was on a ventilator for 9 month and tube fed for 7 months but is improving everyday and is now walking at age 2 and learning at an amazing rate. Although she is only 25 months (adjusted), her comprehension level is that of a 32 month old. She signs ASL and knows over 60 words now. She's my little miracle!
I have Beckers Myotonia congenita,no DNA test but have all markers,body builder muscles,plus few odd problems,can't straight arms,3 daughters normal,no known family with disease.Thanks for the video FL.USA
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! HOPE THERES ALREADY A CURE
dilan678 2 years ago 5
this shit sucks
and it hurts!
no cure...
well i say at least let me life live joyfully
and help me get SAFE ACCESS NOW to holy ancient sacred cannabis!
i want to stop going to the streets to buy a plant with great medical value
i SHOULD be able to go into a pharmacy and buy an herb that helps me fucking walk regularly and skateboard with less pain
my father had this disease without even knowing what it was.
now i know.
WORLD WIDE [ RE ! ] LEGALIZATION!
diegopunk 2 years ago
Thanks for the info
dariusgoeswest 3 years ago
Thank you for the work you do on myotonic dystrophy. My daughter Kayla was born in July 2005 with the congenital form of the disease with 2500 CTG repeats. She was on a ventilator for 9 month and tube fed for 7 months but is improving everyday and is now walking at age 2 and learning at an amazing rate. Although she is only 25 months (adjusted), her comprehension level is that of a 32 month old. She signs ASL and knows over 60 words now. She's my little miracle!
Baby Kayla's Mom
BabyKaylasMom 4 years ago
I have Beckers Myotonia congenita,no DNA test but have all markers,body builder muscles,plus few odd problems,can't straight arms,3 daughters normal,no known family with disease.Thanks for the video FL.USA
inagod 4 years ago