When an SMA diagnosis makes a headline — and when it doesn’t
Celebrity coverage of SMA can bring about complicated feelings
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SMA doesn’t usually make headlines unless the person affected is famous.
When Jesy Nelson, former lead singer of Little Mix, shared that her newborn twin daughters had been diagnosed with SMA, global attention followed. Entertainment outlets covered the story widely, social media filled with messages of concern and support, and SMA suddenly became part of a mainstream conversation.
For those of us who live with the condition every day, the sudden spotlight was both validating and unsettling.
Whose stories get to be heard?
As someone who has lived with SMA my entire life, I read those headlines with empathy for Nelson as a mother. Receiving an SMA diagnosis, especially for your children, is life-altering. It brings fear, grief, and an avalanche of questions about the future. No amount of fame shields a parent from that reality, and her pain is real and deserving of compassion.
At the same time, I couldn’t ignore a familiar ache.
My life with SMA has unfolded mostly outside the public eye. It has been shaped by ventilators and lifesaving medical equipment, by caregiving schedules and inaccessible spaces, by constant planning and adaptation. I’ve learned how to advocate for myself in doctors’ offices, schools, workplaces, and everyday interactions, often explaining what SMA is to people who had never heard of it before meeting me.
My diagnosis never made headlines.
Neither did the hospital stays, the moments of uncertainty about my health, or the emotional weight of living in a body that requires ongoing medical support. Like so many others in the SMA community, my story has existed quietly, shared in support groups, advocacy spaces, and personal conversations rather than across news outlets.
People living with SMA and their families had been raising awareness long before celebrity coverage entered the picture. We have fundraised for research, celebrated treatment breakthroughs, pushed for access to care, and educated the public one conversation at a time. Awareness has never come easily for us. It has required persistence, vulnerability, and the willingness to keep speaking even when few people are listening.
That’s why moments like this bring complicated feelings.
SMA is still considered rare in mainstream culture, but it has never been rare to those of us living with it. It has shaped how I move through the world, how I conserve energy, how I work, and how I imagine my future. It has been a part of my life every single day, long before it was attached to a recognizable name.
This isn’t about questioning Nelson’s intentions or minimizing her experience. I don’t believe she asked for the level of attention surrounding her daughters’ diagnoses that she’s getting. Still, it would be dishonest not to acknowledge that fame creates a megaphone, amplifying some stories while others remain largely unheard.
When people in the general public are diagnosed with SMA, it doesn’t trend. It doesn’t spark global conversations or waves of media coverage. Many of us have had to work twice as hard to be visible, to be believed, and to be taken seriously while also managing complex medical needs and the realities of disability.
If there is hope in this moment, it lies in what comes next.
I hope that the attention surrounding Nelson’s daughters doesn’t stop with curiosity or sympathy, but opens the door to a deeper understanding of the broader SMA community that has always been here. A community made up of children and adults, parents and caregivers, advocates and survivors, whose lives are shaped by this diagnosis every day.
SMA is not new. And it is not confined to famous families.
It is a lifelong reality carried by thousands of people whose stories matter, whether or not the world is watching.
Note: 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 other 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. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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