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Hello! Sorry to disturb Tell me, please, do you also need to use oxygen with a tube for Kugelberg spinal muscular amyotrophy? For example. By the age of 40?
How To Get More Energy?
Hi, good morning guys, I am going to change my life, and planning to increase my body weight, but I have no idea on Sma diet, I am not being over 25kg although I am 23 years old already
Can someone who see this post can understand my situation and give a suggestions to me?I am using a Naso-enteric tube for almost 3 years now. Doctor said I will get aspiration pneumonia if still use my mouth to swallow food. I am drinking the milk (brand: Ensure Gold) only with 200ml/4 scoop of powder every 2… read more
Hello, I am a mother of a child that had type 1 sma. When she was 15 months old she was diagnosed and the drs told me she would not make it to 2 yrs old. They were wrong. She passed away at 12 1/2 yrs… read more
When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
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
What Is The Ideal Diet For A Vegetarian SMA Patient ? Any Leads Is Appreciated
It all depends on what type of SMA you have. I think you should ask your doctor for the best advice.I wish you the best! And Happy Thanksgiving!!
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
How Often Does Everyone See There Neurologist, Especially Type 3?
Enkrat na 4 mesece. Pa Å¡e to zaradi doziranja zdravila spinraza
Any Idea When Risdipalm Is Going To Be Available To Type 4 And Does Anyone Regret Taking In Past?
Why Here Has SMA-LED
hi i am Esther Geertsma from the netherlands and i and my mother and grandfather we had al 3 SMA-LED i look for people of the same and call with you
Hi Esther, I do!
I Will Be Speaking With A Representative Concerning The Challenges Individuals With Disabilities Face Concerning Attendant Care 12-16-2024
What topics, examples, problems, solutions do you have in any regard concerning the physical, financial , mental or any aspect of obtaining, hiring or maintaining attendant care especially in regards to state and Federal programs. Experiences, finding, paying for, etc etc. I am not entirely sure what position person is in I will be speaking with, but they could possibly be in a position to advocate for changes ...so this is very important. Please encourage others to reply.
I am hoping they fold medicade into medicare and offer caregiving service. why do we have 50 separate medicades? Just make it one, and help those that need help the most. my two cents....
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