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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?
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!!
How Often Does Everyone See There Neurologist, Especially Type 3?
Enkrat na 4 mesece. Pa Å¡e to zaradi doziranja zdravila spinraza
Does Risdiplam Cause Constipation Or Acidic Stools?
My daughter has been dealing with constipation lately. Wasn’t sure if it is Risdiplam related or not. When she does poop and it’s soft it burns her bottom. She will get a raw butt quick. Any suggestions on how to help soften her stool? She turned one in December. She can eat soft solid foods by mouth and drink liquids by mouth. We have a gtube but do not currently use it.
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
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