Advice for Younger People with SMA

We asked our team of advocates: What advice do you have for younger people with SMA?

Learn how to adapt

Allie: Learn how to adapt what you enjoy doing to your specific needs. If you like to sing, but only have 30% lung capacity, sing!

If your hands don’t work, but you like to draw, try graphic art on the computer. If you are a gamer, find adaptive controllers and keyboard settings to help accommodate the games you love.

Adapting things you love is the most important skill you will have as an adult and no one knows your needs more than you.

Find a community of others with SMA

Samantha: My advice for younger people with SMA would be to find community with others who have SMA. It will provide you with a network to deal with the mental, physical, and emotional challenges that come with having a rare disease.

People with the same disability have similar experiences and can share tips, tricks, and knowledge that those who do not have your disability just cannot. Having a community to support you can provide you with knowledge, confidence, and a voice you may not know you had.

Social media, different online platforms, and different groups have already been established. Do a search to see if your rare disease already has a community just waiting for you.

Life is a wonderful ride

Michaela: I give them the advice my older sister Martina gave to me - we can do most things, albeit maybe differently, as people who don’t have SMA. My motto in life a lot is that walking isn’t necessary and life sitting down can be rich and vibrant.

The main thing is that you are in control of your destiny with SMA. I can’t shout so I learned how to use my voice without raising it - and that can be a really cool tool professionally and personally when things are tough and you need to push for your rights.

And yes, people might try to deny you those from time to time. It’s rarer than it used to be but don’t be afraid to push back and tell people it is wrong.

We in the older generation are still working on it though, and we have your back. I do what I do so hopefully you won’t have to - but if you do, we are here to help you fight back!

Most of all though, life is a wonderful ride. Strap in and find the joy. There’ll be ups and downs just like other people's lives. But you have a community here to ride it with you, too.

Find ways to problem solve and get creative

Chaz: Don’t ever use your disability as an excuse for living your life and accomplishing your dreams. I know that is easier said than done and there are definitely times when I realize the thing I want to do would be easier if I wasn’t disabled.

But I take that as an opportunity to problem-solve and get creative. A lot of people just get frustrated and give up without realizing they’re hurting themselves in two ways: letting your disability control you and not having the chance to learn and grow while you overcome a particular obstacle.

Whatever dream you have, figure out a way that makes it possible and works for you.

Don't let SMA take away your joy

Ainaa: Life is only as good as you choose to make it. There are going to be bad days. There are going to be hard times. There are going to be challenges to overcome and mountains to climb.

But there is also going to be room for joy. You just have to choose to remember it that way. Do what makes you happy.

Don’t let SMA stop you from doing what you love. Being disabled doesn’t mean you can’t do things like others. You can still enjoy doing things you love but differently.

None of us know how long any of us would be here, so we should always strive for our lives to the fullest. Keep the prayers and positivity going.

Live your life and overcome barriers

Mike: Live life. One of my biggest regrets has been waiting for a cure. Don’t give up that hope. I do believe it will happen. I just don’t know when. I hope I see it in my lifetime but there are no guarantees.

Don’t sit around and wait for it. The older I get, the more I see how much time I wasted. Don’t be afraid to go out of your comfort zone.

I understand that we have to deal with barriers however if you have someone in your life who is willing to help you overcome those barriers, take them up on it. Don’t be afraid to fail multiple times. You’ll never know if you don’t try.