7 Things Adults With Spinal Muscular Atrophy Want You to Know
Conditions that affect your muscles can greatly impact your life. One such condition is spinal muscular atrophy (SMA). SMA is a group of hereditary conditions that affect the muscles and can cause severe and fatal complications. Due to increased research , people with SMA have more treatment options than before to increase quality of life.
Like with many other rare diseases, adults with SMA can face stigma about what their experience with SMA must be like. People with SMA aren’t just their condition – they have relationships, jobs, families, hobbies and a full life like anyone else. SMA advocate Crystal Rondeau, who has SMA type 2, wrote about her experience living with the condition:
I’m 29 now, and I am continuing to get weaker and sicker, because that’s what SMA 2 does, but I don’t let it stop me. I go out, I have friends, I have had romantic relationships, and I’m an advocate for people like me. I also do modeling for photographers as an alternative model; I’m covered in tattoos and piercings. I may have SMA 2, but SMA 2 doesn’t have me.
As Rondeau noted in her piece, living with a condition like SMA can have its ups and downs. But the reality of what having spinal muscular atrophy is really like may be invisible to loved ones who don’t quite get the condition. So, The Mighty asked members of our SMA community and Cure SMA‘s community to share what they want people to know about their lives with SMA. If you are a parent of a child with SMA, you may find these insights from adults helpful.
Here is what they had to say:
1.
Being disabled doesn’t mean we are any less than our able-bodied counterparts. SMA may rob us of our physical abilities, but it doesn’t take away from the fact that we are still worthy. — Alyssa S.
2.
It’s not all about the wheels. It’s the weakness I struggle with, the breathing issues and illnesses related to that. The not being able to do little things, like open a book by myself, or make a cup of tea. It’s not all doom and gloom though. SMA has enabled me to be creative and adaptable. I’ve met some incredible people due to my disability. The world could be a little more accessible, I have a good life, just with a dash too much shingle. — Gemma O.
3.
Life with SMA has taught me to be grateful for things that may seem easy and little to another. Smiling brightens the world in an amazing way. Support and kindness make life with SMA easier. Independence in life with SMA means cooperation from a network of people. I can change what I have control over since I have control over my mind. … I daily seek to have a positive attitude. — Goitseone K.
4.
I am not a burden. I am worthy. I am also a person and not just your inspiration. — Katrina K.
5.
Life is as ‘normal’ as you make it. Don’t let others tell you you can’t. — Marci H.
6.
Your mind is not limited by what your physical body can or cannot do. — John O.
7.
I want others to know that even though I’m in a wheelchair, I’m still mentally fully capable, and I’m a very independent person. I want people to stop giving out pity looks and treat me like a normal person and realize that I am more than capable of a lot of things. — Natalie O.
Check out these articles for more stories from our SMA community at The Mighty:
- Keeping My Face Toward the Sunshine as a Young Woman With Spinal Muscular Atrophy
- Learning to Love Myself as a Disabled Person in an Ableist World
- 12 Everyday Frustrations of Being a Wheelchair User
- When a Doctor Told Me I’d Just Have to Live With Chronic Pain
If you are an adult who has spinal muscular atrophy, share what you wish others knew about living with SMA in the comments below.
Image via Getty Images/LightFieldStudios
Julia Métraux is a health and culture writer whose work has appeared in Narratively, The Tempest, BUST, and Briarpatch Magazine. Follow her on Twitter at @metraux_julia and on Instagram @julia.metraux
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