Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more
My daughter is 18, she is receiving maintenance doses of Spinraza and she has told me that she's feeling stronger
Hi. Im 47 years old type 3 and Im on around #15th injection. It has helped me a lot but I noticed a bigger difference when combined with PT/OT. I noticed better balance, less fatique, and I have gained some strength.
Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did you gain access to such a wonderful opportunity? I’m sorry for the indecent nature of my question but I think we are all probably wondering🤷🏼♀️ Lots of lovely vibes heading you way truly💕
I am 35 yrs old type 3. I was diagnosed at 18 months old. My parents noticed my wobble when I walked and that I had difficulty with stairs. I participated in dance class until I could no longer keep up with the other students. I was about 7 yrs old when I realized my body couldn’t do what others could. My greatest accomplishments include moving away from home, obtaining my Masters Degree, and raising a wonderful boy with my husband. I am on my 10th dose of Spinraza and believe it to be the reason I am still walking.(Along with God).
I am 24 and I am currently not receiving treatment, but I do plan on going on Risdiplam. I have type 1 and I was diagnosed at 6 months of age. When I was 9 months old my mom decided to have me trached and g-tubed. This is all I've ever known, so my parents never really had to explain anything to me and my siblings never had any trouble with it either.