I have type 3 as well and life is a lot harder because of it. i wish there was something that would be helpful my doctor isn't a SMA specialist that's for sure.
I have type 3 and i try to be strong, but it is he'll. I need the views and information of ANY doctor willing to look at my illness. Thanks Dr Leshner, I'm thankful for your help! Yes, type 3 is he'll and we do not get the help we need sadly.
could be said about any disability/disease..type 3's are so rare that we don't have a voice except big shot dr's on their highhorses telling "us" about what it is like to live with the disease..truth is sma 3 mobility speaking is an average beckers, or a moderate Limb Girdle on average. The difference is it doesn't affect the heart well there finding out it does now, but doesnt short lifespan to the same degree, other then that it's a tough disease!!
Nice way to again downplay the type 3's, yes relatively speaking it is much milder then a type 1 or most type 2's.However, if this were M,S or any other disease, thee effects it has on a person would be considered quite severe/disabling..cant get up from chairs, walk without constant falls, eventually need a wheelchair, incapacitating hand tremors/myoclonus, the backpain/stiffness, inability to lead a healthy life, yes we all know anything is possible "look at Steven Hawking" but the same then
I have type 3 as well and life is a lot harder because of it. i wish there was something that would be helpful my doctor isn't a SMA specialist that's for sure.
DragonDefiler 8 months ago
I have type 3 and i try to be strong, but it is he'll. I need the views and information of ANY doctor willing to look at my illness. Thanks Dr Leshner, I'm thankful for your help! Yes, type 3 is he'll and we do not get the help we need sadly.
Kazob4 1 year ago
could be said about any disability/disease..type 3's are so rare that we don't have a voice except big shot dr's on their highhorses telling "us" about what it is like to live with the disease..truth is sma 3 mobility speaking is an average beckers, or a moderate Limb Girdle on average. The difference is it doesn't affect the heart well there finding out it does now, but doesnt short lifespan to the same degree, other then that it's a tough disease!!
njmjp 1 year ago
Nice way to again downplay the type 3's, yes relatively speaking it is much milder then a type 1 or most type 2's.However, if this were M,S or any other disease, thee effects it has on a person would be considered quite severe/disabling..cant get up from chairs, walk without constant falls, eventually need a wheelchair, incapacitating hand tremors/myoclonus, the backpain/stiffness, inability to lead a healthy life, yes we all know anything is possible "look at Steven Hawking" but the same then
njmjp 1 year ago