Adult With SMA Shares His Perspective on Spinraza


While most people associated with spinal muscular atrophy (SMA) are celebrating the FDA’s approval of Spinraza, one man with SMA is sharing a different take on the drug.

MORE: Find out about the film which encourages SMA patients to reach beyond their limits. 

Fifty-four-year-old Ben Mattlin has had plenty of time to come to terms with having SMA. While he too welcomes the drug and looks forward to hearing how it can help others, particularly babies with type 1 SMA who are not expected to live beyond their second birthday, he doesn’t want the treatment for himself.

In an article in the New York Times, Mattlin admits that he’s never stood or walked on his own, and is now too long past the point of even wanting to. Although he needs help for every area of his life from personal hygiene to driving his minivan, he is happy and content. He’s had a lifetime to accept who he is and have others accept him.

He is proud to be part of the disabled community and feels that he would become a traitor if he started treatment after fighting so hard for equal access and fair treatment.

Read Mattlin’s full opinion piece in the New York Times.

MORE: Read about eight notable people who have spinal muscular atrophy.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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