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When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
I Am 68 And Have Spinal Muscular Atrophy. How Do You Live After You Lose Your Independence?
Your independence is up to YOU! I'm 65 and I'm always going out. Such as concerts, sporting events, and dinners with family and friends. We all have choices. You're letting SMA define you. People with… read more
How Common Is Respiratory Acidosis Among Those Who Have Spinal Muscular Atrophy?
So...i know respiratory difficulties of all sorts are common with SMA. I can't speak specifically about respiratory acidosis.
Can SMA Include Bursitis Type Of Systems?
I can understand and share with your frustrations. I finally got some interest after receiving MRIs for my back. Sence having MRIs that revealed what appeared to be muscular atrophy I have been… 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 🤣🤣🤣🤣🤣
I Have SMA Type 4 What Do I Tell My Doctors?
I always share my SMA diagnosis with my doctors. I usually have to explain what it is and how I’m affected by it. I believe it’s important for them to know everything about me in order to understand… read more
Shortness Of Breath
I have scoliosis, I am 21 years old. And I have scoliosis since childhood. This year, I started to feel short of breath when sitting and sometimes when lying on the back. Does scoliosis cause death in cases of spinal muscular atrophy? I only use PIBAB while I sleep.
Yes
I Would Like To Give Everybody’s A Hug. Remember We Are Great People’s With Love In Are HEART.
My son has been diagnosed with a genetic pathology of VRK1 non5q SMA. It appears to be very rare with little to no information about it.
He has advanced atrophy of his right calf muscle and the… read more
Type 3B And 4 Transition From Walking To Wheelchair
Can you share a bit about how the transition went for you over time? For example, I have difficulty standing from a seated position, but will I continue to be able to stand? I'm thinking about what sort of transfer I might be capable of long-term. Have you maintained arm strength? It not, what limitations have you encountered?
That will be needed down the line but for now I'm able to walk short distances and manage self-care. I'm trying to get a sense for the sequence of events in the future.
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.
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