Duchenne Muscular Dystrophy & Creatine
There are certain topics where the distance between the science and the lived experience feels especially wide. Duchenne muscular dystrophy is one of them. Whenever I speak with parents, clinicians, or researchers working in this space, the conversation always circles back to the same truth: families are searching for anything (anything) that can help preserve strength, function, or simply buy more good days.
One parent, Ben Stuart, a DMD dad whose son Mac was diagnosed with DMD three years ago and who is the inspiration behind the charity Mac My Day, contacted us recently, searching for more information and answers about creatine.
And as creatine becomes more mainstream, almost oddly fashionable in the wellness world, a very different question emerges quietly in the background: What about the people who actually might need it the most? Not the athletes or the Instagram biohackers, but rather the boys living with a progressive neuromuscular disorder where every percentage point of muscle or bone retention genuinely matters. This is the gap we need to talk about.
Duchenne is complex. A genetic condition that rapidly impacts muscle tissue, bone density, functional mobility, and ultimately, the everyday rhythm of childhood. Standard supplement research seldom includes populations like these; not because of a lack of interest, but actually because rare diseases sit on the edge of convenience. The studies are harder to run, understandably. The sample sizes are small. And when a supplement becomes trendy, the industry’s attention tends to drift toward the masses, not the niches. But DMD isn’t a niche. It’s a population for whom even incremental improvements can be profoundly life-changing.
This is where things get interesting and, honestly, under-discussed. The data Dr Darren Candow shared with me when I checked in with him on this topic highlights two small but meaningful clinical trials:
The first, Louis et al. (33), looked at 3 grams of creatine per day for three months. The results weren’t loud, but they were promising: a 33% reduction in urinary N-telopeptides and a 3.9% increase in lumbar spine bone mineral density in ambulatory boys. For a condition that erodes strength over time, those numbers are not trivial.
The second trial, from Tarnopolsky et al. (46), used 0.1 g/kg per day over four months. Here, whole-body BMD didn’t change overall, but there was a 19% attenuation in N-telopeptides, suggesting less bone breakdown… even if the effect wasn’t as pronounced.
So, these aren’t blockbuster data sets, but they point to something important. Creatine may not dramatically alter disease trajectory, but it may support bone health, muscle energy metabolism, and short-to-moderate-term function, especially in children who are still ambulatory. Which I’m sure you can agree with me about, is worth paying attention to.
Another nuance that rarely gets airtime: geography shapes clinical practice. In Australia and New Zealand, for example, creatine as an adjunct therapy is already part of the conversation and actually often recommended alongside corticosteroids. The clinical culture there leans more toward “low-risk, potential benefit.” Meanwhile, in the US and UK, the typical stance is more cautious. The kind of cautious that often translates to “safe, but probably ineffective.”
Not because anyone is opposed to creatine, but because there isn’t enough localised, robust trial data to shift consensus. This fragmentation leaves families navigating conflicting guidance and clinicians navigating the gaps between global research philosophies.
Creatine will never be positioned as a cure, nor should it be. But it may have a role to play: supporting muscle energy metabolism, preserving bone markers, and offering another layer of resilience during key stages of disease progression. It’s not a silver bullet by any means, but it’s a small tool and one that might matter for boys with DMD.
And like everything in DMD, it should be supervised, individualised, and grounded in a clinical context rather than online enthusiasm.
As creatine continues its rise as a “mainstream wellness staple,” there is a risk that the industry only thinks about the general population: women, athletes, ageing adults, and people chasing performance or longevity trends. Meanwhile, the communities that have the most to gain remain on the outskirts, underserved and understudied. This is a call-in, not a call-out.
Pharma, supplement companies, research organisations, and even ingredient suppliers have a real opportunity here to bring scientific rigour to rare conditions, to explore what small molecules can do in high-need populations, and to partner with advocacy groups like Duchenne UK to make sure the evidence keeps evolving.
If creatine is going to become one of the most widely used supplements on the planet, then it should be studied in the populations where it could actually change someone’s daily life and not solely their gym performance.
To wrap this up, creatine shows genuine potential in DMD. Early, promising signals that deserve more research, more attention, and more thoughtful communication. Families navigating Duchenne already have enough uncertainty. What they need most is clarity, honesty, and the assurance that the industry is willing to prioritise them.
And from my perspective, the path forward is simple: we need more data, more collaboration, and more willingness to study the people who often get left out of scientific trends.
We all rise together,
Rachael Jennings | Co-Founder + CBO, Jenerise
