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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.

What Advice Would You Give About Working With SMA Doctors And Care Providers?

What Advice Would You Give About Working With SMA Doctors And Care Providers?

A mySMAteam Member said:

I would do your own research. There is so much information online that can help you make decisions with your doctors and health care providers.

SMA can be tricky in that it is very different from type to type and even person to person. You have to be willing to take a lead on your care and get your needs met.

Researching experts in the SMA health community, talking to others about their experience and how they got what you want can be beneficial, as well as presenting new information to your team that you would like to try.

Doctors and health care providers do not have all of the answers. They can be a great resource though.

posted 5 days ago
A mySMAteam Member said:

I agree!

posted 11 days ago
A mySMAteam Member said:

As a 57 year old with SMA 2 who spent 3 years as a teenager in an institution, I implore you NOT to put in a nursing facility! Trust me, she will not be well cared for and will not do well. MA has a lot of help for people with disabilities to pay for caregivers. Get the state office of disability rights to help you keep her home or help her get a home of her own. Seek info on "The Money Follows the Person."

posted 19 days ago
A mySMAteam Member said:

I've got a daughter at Boston children's for about a month she's 19 with sma stage 2 probably never walk again as a parent I feel horrible that I can't do nothing for her and she will end up in a nursing facility I know it's probably the best thing for her but the of her being away from home bothers me when I know I can take care of her myself it all about positioning at all times bed sores has always been a constant struggle wound care is the hardest thing I've had to deal with without them getting infected I'm also also 2 hours away from her by the way her name is Alisha and I'm just venting.

posted 20 days ago
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