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
Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇
I am 71 years old. I was diagnosed with SMA type 4 32 years ago. I have a colostomy, a feeding tube, and use a ventilator daily for non invasive ventilation. I am quite weak, can no longer walk and can only stand briefly with assistance, I am bed bound and have chronic pain. I feel I have little time left on this earth and my doctors agree. I have started hospice, but the hospice company says that SMA is not considered a terminal disease. They have, however, qualified me for hospice with my… read more
I have SMA type 3(permanent wheelchair user) and asthmatic , l have been working remotely since pandemic and now my work wants me to go back to the office - l am still anxious even though l am vaccinated. I spoke to my Healthcare provider thinking they could give me a letter for work to state l should continue teleworking since l am high risk. However my Healthcare provider said the opposite that SMA and Asthma is not high risk and only people with auto immune are classed as high risk.
I have… read more
My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!
We previously had a r82 Flamingo, but are looking for something with more padding under the bum as the Flamingo is not comfortable enough. I'd like something that can roll over a toilet, but also be used with a pot. Thx! :)
I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?
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