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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!
I've been on Spinraza since 2018. I feel it's the best for me. But you should ask the neurologist. Even seek out a second opinion. I'm sure this wasn't the answer you were looking for.
Is There A Resource On Here To Share Experiences We Have With Different Products And Companies Who Sell Those Items?
Specifically a company who has, what I believe to be, terrible customer service, misleading company information and demanding sales of their accessories and goods exclusively or void their warranty?
Earning Money While On Disability
How do you earn money without loosing critical disability benefits and Medicare ? So, in many ways, I am very lucky. When I started needing attendant care, I did the math and there was no way I could earn enough money, keep working, and pay for attendant care. The programs in my state that cover attendant care very strictly require an individual have less than $2,000 in assets total (including such things as gold teeth, burial plots, etc) and not be employed. If not for my father's support… read more
You have to go informal, I.e. not report earnings, they left us no other option. Create business in others name, yo do the work, selling online for example. The 2k limit is ridiculous, there is… read more
Name The One Thing You Find Most Challenging About SMA.
SMA is very frustrating as we become more and more limited. I miss walking.
What Are The Steps To Get A Diagnosis Of SMA? What Kind Of A Doctor Would I See? I Live In Wyoming And Specialties Are Rare.
I have been seeking help for back pain that got worse 2 years ago. I was recently told by a spinal surgeon that an MRI from two years ago showed that my spinal muscles have atrophied, another MRI recently confirmed it.
I'm Curious What Others Experiences Are With Driving. I Live Near LA And Go To Work To LA All The Time, Curious If Others Are Able To Drive?
ah I see, do you drive with a modified car now? if so how's that going and what modifications you have?
Even Though You (or A Loved One) Suffer From SMA, Would You Change The Life You Have?
No wrong answer I'm just curious how others perceive this situation we are all in.
The one and only thing that I would change would be the fact that it took my husband at such a young age(47) very quickly and unexpectedly. I would have been very adamant about the doctors approach… read more
What Is The Life Expectancy For SMA Type 1?
My friend told me I am old than the planet Pluto. That was funny 🤣🤣🤣🤣🤣
Anxiety Experiences With Sma Is Intrinsically Linked To The Condition Not As A Result Of, Is Comes With A Fatigue Totally Different
I anxiety comes from total lack of support services found in USA
I Asked This A Month Ago. My Grands Have Been Diagnosed With SMA. How Would It Manifest Itself In Their 73 Yr Old Grandmother
Genetics test
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