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SMA

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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Can A 23 Year Old Take The At Home Drug For SMA?

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!

A mySMAteam Member said:

I am so sorry to hear you went through this! My son also had spinal fusion when he was 3, another reason he was so hesitant to try the Spinraza. We will look into the oral stuff more, was just… read more

posted 6 days ago

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

We previously had a r82 Flamingo, but are looking for something with more padding under the bum as the Flamingo is not comfortable enough. I'd like something that can roll over a toilet, but also be used with a pot. Thx! :)

How Do You Communicate?

How Do You Communicate?

Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇

Gene Therapy

Gene Therapy

I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?

A mySMAteam Member said:

I believe every child is different. The child that I know of that received zolgensma is also receiving another treatment (Risdiplam) as well. She was a type 1 who is now able to lift her leg over her… read more

posted 6 months ago

Recently Diagnosed With SMA4 Based On Deketion If The SMN1 Gene. How Do I Know If The SMN2 Backup Gene Produces Adequate Protein?

Recently Diagnosed With SMA4 Based On Deketion If The SMN1 Gene. How Do I Know If The SMN2 Backup Gene Produces Adequate Protein?

I'm recently diagnosed with adult-onset SMA based on the entire deletion of the coding sequence gene SMN1. Is there a test to determine if the backup gene SMN2 produces enough protein to counter the deletion of the SMN1 gene? Also, I'm getting conflicting stories from local neurologists. One says it's adult-onset SMA and the other says you're just a carrier. So what's going on? My symptoms include constant tingling and spasms in my feet and legs, in my hips, across my shoulders and neck. I… read more

A mySMAteam Member said:

I have adult onset and I walked pretty well until 50. Than at 52 I broke my femur. That is when it started to progress. I now can walk only little spurts in the house and I constantly have lower back… read more

posted 9 months ago

Are There Any Moms Who Had Been Diagnosed Before They Had Children?

Are There Any Moms Who Had Been Diagnosed Before They Had Children?

A mySMAteam Member said:

I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more

posted 3 months ago

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

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

A mySMAteam Member said:

Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did… read more

posted 8 months ago

Surgery For Scoliosis

Surgery For Scoliosis

Im not a child,my doctor said in about 8years I will probably have to have surgery but it involves 3levels And it would be a major surgery so wants to hold off for awhile. Can you tell me why maybe

A mySMAteam Member said:

What kind of surgery?

posted about 1 year ago
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