Dave’s Story: Fighting McArdle’s with Data, Not Despair | DeHealth Patient-Led Revolution

"I look fine on the outside. But try asking my kidneys after I lift groceries."

Meet Dave, a 39-year-old mental health worker from Melbourne, Australia. He doesn’t wear a white coat or hold a PhD. But this man is helping rewrite the future of medicine — not in a lab, but on his phone.

He lives with McArdle’s disease, also known as Glycogen Storage Disease Type V. It's a rare, invisible metabolic disorder that disables the body's ability to access its main energy reserve: glycogen. For Dave, this means that everyday tasks like climbing stairs or running for a bus can trigger excruciating muscle pain or even send him straight to the ER. If that sounds scary, it’s because it is.

When Rare Becomes Dangerous

In early 2024, Dave was admitted to a hospital with rhabdomyolysis — a dangerous condition where muscles break down and release toxins into the bloodstream. He showed the staff his medical alert card. Told them about McArdle's. Begged them to call his specialist.

No one listened.

"For three days, I was deteriorating in front of them," Dave says. "It took one nurse to finally catch something off in my bloodwork. That nurse saved me."

This isn’t just a tragic anecdote. It’s a systemic failure. According to the National Organization for Rare Disorders (NORD), over 90% of rare diseases have no FDA-approved treatment, and patients often experience diagnostic delays of 5 to 7 years (source).

Enter DeHealth: A Tool, a Movement, a Lifeline

Shortly after his hospital scare, Dave connected with the team behind DeHealth — a global AI-powered health app built for people, not systems. Its goal? To give patients real control over their medical data and help them see patterns, get second opinions, and stay one step ahead of disease.

DeHealth isn’t just a tracker. It’s a Medical Passport. Dave uploads test results, notes cramps and fatigue, tracks food and activity. And the app shows him connections: "Hey Dave, maybe that energy crash came after you skipped breakfast. Or those cramps? Same pattern as last week, same meal."

"Now, I don’t just wait for something to go wrong. I see it coming."

It gets better. When Dave walks into a clinic now, he doesn’t start from scratch. He opens the app and hands over his encrypted data with one tap. No more blank stares when he mentions McArdle’s. Just facts. Just proof. Just care.

🧠 A Health System in Your Pocket

From Survivor to Co-Researcher

What makes this story exceptional? Dave didn’t just use DeHealth. In May 2025, DeHealth signed a legal R&D agreement with Dav., creating the first global, patient-led research collaboration for rare diseases.

His case became the first in a series of international collaborations between patients and AI engineers, creating tools that give agency back to the people who need it most.

Supported by a team of cybersecurity experts, data scientists, AI engineers, clinicians, and bioethicists, Dave is helping shape features like:

📷 A photo-based food log with auto-calorie detection.

⚙️ Flexible push notifications for fatigue tracking.

🔗 Report uploads and secure doctor sharing.

All tailored not to the “average user” — but to the most underserved.

“With DeHealth, I have my full medical history in one place. I don’t have to explain McArdle’s to every new doctor. I just show them.”

Together with DeHealth engineers, doctors, and data scientists, Dave began co-creating features tailored for rare disease patients: fatigue tracking, food photo logging, emergency alerts, and even pre-visit doctor summaries.

This isn’t theory. It’s happening.

"I used to think no one cared about my condition. Now I’m helping build the app that will save lives."

And the best part?

He controls everything.

“The more data we contribute, the smarter DeHealth gets — for everyone with rare diseases.” 

What Happens Next?

What’s Next: A Global Wake-Up Call 

DeHealth’s campaign with Dave is just the beginning.

A series of public articles, interviews, and educational videos will be released throughout 2025 to raise awareness about how data equity and intelligent health infrastructure can transform outcomes for rare disease patients.

If we can help Dave — we can help millions more.

No one should end up in the ER because a system forgot who they are.

DeHealth is preparing a global open call to 1000+ rare disease patients to join its first research cohort. The idea? Patients help build the tools they actually need, and in return, gain back something healthcare has stolen for too long: dignity.

Meanwhile, Dave is becoming the face of a new kind of science. One led not by labs but by lived experience.

You can watch his full story here https://youtu.be/eGG1-ktv5YA  or follow the campaign #RareButNotAlone on Instagram and LinkedIn.

Why This Matters

Digital health is broken. Too much data sits in silos. Too many patients are invisible. Too many doctors have no time to listen. But with the right tech and the right people, the system can be rebuilt from the inside out.

"With DeHealth, I’m not just managing McArdle’s. I’m taking charge of my life."

If Dave can do that from Melbourne with nothing but his phone and his story, imagine what a million Daves could do.

Be like our hero Dave! 

📌 Reference Note: What is McArdle’s Disease?

McArdle disease (GSD V) is a rare inherited metabolic disorder affecting muscle energy metabolism due to a lack of the enzyme myophosphorylase.

🧬 Prevalence: ~1 in 100,000 people

🩺 Symptoms: severe muscle cramps, rapid fatigue, and risk of rhabdomyolysis during physical activity

🧪 Diagnosis: genetic testing (PYGM gene), elevated creatine kinase, muscle biopsy

📚 Official sources:

Orphanet: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=358 

NIH GARD: https://rarediseases.info.nih.gov/diseases/7651/mcardle-disease 

NORD: https://rarediseases.org/rare-diseases/mcardle-disease/ 

PubMed: https://pubmed.ncbi.nlm.nih.gov/31937625/ 

European Guidelines: https://onlinelibrary.wiley.com/doi/full/10.1111/ene.12183

With DeHealth, we’re building more than an app — we’re building a system where patients lead the cure.

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🎥  Watch His Story: https://youtu.be/eGG1-ktv5YA

Follow the campaign: #RareButNotAlone #DPaaS #ImWithDeHealth #SmartHealth2025 #MyHealthStory

DeHealth = DPaaS. Data-driven Prevention as a Service. Powered by your data. Guided by your experience.