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Top 3 Search Results for "Clinical trials"

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Clinical Trials

Clinical Trials

Can someone of this group tell me something about myostatin inhibitors for people with SMA?

As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?

As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more

A mySMAteam Member said:

Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every… read more

posted 3 months ago

Can A 23 Year Old Take The At Home Drug For SMA?

Can A 23 Year Old Take The At Home Drug For SMA?

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!

A mySMAteam Member said:

Hi 👋🏼. I’m 33 years old and take Evrysdi the oral medication for SMA. It is approved for all ages and all stages of SMA. I have been on it for 3 months. I feel my side effects have been minimal… read more

posted 7 months ago