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Hello
I’m new to this forum, so I’d like to introduce myself. I’m a retired Speech therapist and a mother and grandmother. I was diagnosed at 20 years old with SMA 3. I always knew something was wrong with me but doctors and adults in my life didn’t take me seriously. I felt vindicated when my doctor said he knew what was causing my symptoms of muscle weakness, but devastated to learn it was progressive and there wasn’t a treatment or cure.
Thirty years later, I started receiving Spinraza. I use a walker inside and a scooter when I’m out. I’m thankful for a treatment and for groups and forums that provide support.
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4 Replies
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Hi Lisanne. Welcome to the forums. We’re glad you’re here. 🙂 I’m a moderator here along with @deann-r and @kevin-schaefer ! If you have any questions about the forums feel free to ask us.
How long have you been on Spinraza? Have you noticed a difference in strength?
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Thanks for welcoming me here. I started receiving Spinraza in 2018. I definitely think it’s helping to slow the progression of SMA. I’ve suffered through 5 fractures in the last four years and am still able to walk with the aid of a walker. I believe I have Spinraza to thank for that.
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Lisanne,
Dennis here. I also have type 3. I was diagnosed later in my teens. It wasn’t easy being told by my gym teacher that I was just lazy or being bullied for not being strong enough to do things others thought nothing about.
But I am able to live a full life despite SMA. Married with 3 sons, two grandchildren, worked until about 10 years ago when my employer did layoffs and I decided to retire.
I began my Spinraza treatment in 2020 just as the pandemic kicked off. This treatment has helped stabilize me so I am no longer weakening.
Glad you have joined this forum.
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Hi Lisanne
My partner is 60 and has Type 3. She has been on Spinrazza now for nearly one year.
There doesn’t appear to be much done to assess progress objectively. I suspect deterioration has been slowed down but not much mobility improvement if any.
Is that your experience?
I’m happy to be contacted directly on [email protected]
I’d really appreciate hearing your experiences.
Thanks Ross
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