Diagnosed late with a spinal deformity, he helped thousands. Now he needs help

I want to share something with you…

✅ Don’t have much time? I completely understand, and I still thank you for your attention. Here’s my shortened story.

My name is Tadeáš, and I’m 28 years old. I suffer from severe and progressively worsening back pain caused by degenerated discs, damaged by a late-diagnosed Scheuermann’s disease. Imagine having the spine of an older person in a young body.

It’s June 2023. I’m in my room at one of the dorms in Prague. It’s been six months since I learned about my incurable diagnosis.

Gradually, I’m losing everything I loved — sports, traveling, work, freedom of movement. I start each day with a high dose of prescription opioids — otherwise, I wouldn’t be able to function. I waited 12 years for the diagnosis. I often hear, “Spinal deformities don’t hurt, it’s all in your head.” I’ve lived with that every day — alone, feeling unheard by the system.

But six months later, I decided enough was enough. Partly thanks to determinism, a philosophy I embraced that gave me huge relief. I may not be able to change my past, but I can help shape the future for others. So, together with amazing volunteers in the Czech Republic and Slovakia, I launched an awareness campaign for the most common spinal deformities: Scheuermann’s kyphosis and idiopathic scoliosis (more about the conditions at the end of the page). They affect roughly 10% of children and adolescents, yet many patients go undiagnosed or untreated.

Our intensive awareness campaign reaches both healthcare professionals and the general public through media, medical conferences, and printed guides (see photos below). The campaign is supported by major organizations, including the Ministries of Health of the Czech Republic and Slovakia. It has been awarded the Extraordinary Rector’s Award of Charles University and the Křesadlo Award for volunteerism. It was also selected as the first Czech presentation in history at the World Social Marketing Conference — an honor I deeply value. In addition, I started volunteering at a hospice.

My condition once seemed hopeless. But thanks to a fellow patient who reached out to me, I discovered that there may still be hope. An innovative, scientifically supported regenerative treatment for degenerated discs gives me a 60–70% chance of returning to a functional life. It’s the only curative option beyond physiotherapy. One month of treatment costs 18,000 CZK and it may take up to two years. Right now, fundraising is my only way to cover this treatment — I’ve been dedicating myself full-time to volunteer work for nearly two years, spending most of my own money on the campaign. I also commit that, if treatment succeeds, I will continue dedicating myself full-time to social and nonprofit marketing, helping others. Contributions beyond the goal will go to vital charitable purposes (see below).

I will be deeply grateful for any contribution. And thank you very much for sharing the campaign on social media or with your friends and family — it helps enormously 🙏

Want the full story?

It’s June 2023. I’m in my room at one of the dorms in Prague.

Six months ago, after years of pain, I learned that Scheuermann’s disease had gone undetected during my adolescence. This mostly hereditary condition causes a rounding of the back and degeneration of intervertebral discs. Imagine having the spine of someone much older in a young body. Gradually, I lost what I loved: sports, traveling, work, freedom of movement. I’ve been sadly looking at my floorball stick for years. Every morning I wake up with severe, worsening pain. I start the day with a high dose of prescribed opioids. Without them, I couldn’t even finish my studies, let alone perform any physical activity. There were times when life seemed meaningless through the dark outlook on my future.

Accepting this new reality felt like a superhuman task. I waited 12 years for a diagnosis. “Spinal deformities don’t hurt, it’s all in your head,” is a myth I’ve heard repeatedly — maybe you’ve heard it too if you also struggle with a spinal condition. I’ve lived with this every day. Alone. Because I know the system won’t listen.

But one day, something changed…

I decided enough. This was getting me nowhere. I could never undo the past, but I could influence the present. I accepted my situation through determinism, which brought me immense relief.

It was time to turn dark thoughts into something constructive. My own treatment window may have passed, but I could still help other pediatric patients — and adults with late diagnoses or neglected treatment, whom the system often forgets the most.

It was time to turn dark thoughts into something constructive

I decided to use my education from the Department of Marketing Communication and Public Relations at the Institute of Communication Studies and Journalism, Faculty of Social Sciences, Charles University. With the support of the university, the Scheuermann’s Disease Fund, and countless amazing volunteers, we launched an awareness campaign for early detection and treatment of spinal deformities, targeting healthcare professionals and the public.

I’ve been working on the volunteer project full-time since December 2023. I’m motivated to prevent others from suffering as I have. To ensure children and adolescents are diagnosed and treated early, and adults receive the relief they deserve. I also volunteer at a hospice.

Thanks to cooperative journalists, the campaign has been covered by both professional and public media, including Seznam Zprávy, Novinky, Deník, Deník N, MF Dnes, Info, Medical Tribune, Marketing & Media, TV JOJ, Hospodárske noviny and Czech Radio.

As a patient, I lack medical education, so I devoted months to studying spinal deformities in detail. I collected testimony from roughly 200 patients to understand systemic problems. Thanks to this work, I have presented at around 25 medical conferences in the Czech Republic and Slovakia, reaching pediatricians, rehabilitation physicians, physiotherapists, and orthopedists.

I encountered an incredibly supportive community. Despite my pain and late diagnosis, I could turn my experience into insight for healthcare professionals, understanding the demands of their work: intense study, overtime, shift work, high responsibility, many patients, little time, hierarchical environments, stress, and burnout. Still, many are ready to help improve the system for spinal deformities.

The campaign wouldn’t succeed without volunteers.

A skilled patient prepared printed guides on spinal deformities in two languages. Improx printing company printed tens of thousands at production costs. We distributed tens of thousands of them to healthcare professionals, mostly via conferences and journals.

I created Czech and Slovak Slovak versions of the campaign website.

I manage online patient groups where patients and parents can find support and advice.

When I couldn’t present at conferences, organizers allowed me to participate as an exhibitor. I also presented at hospital seminars in university hospitals. I am grateful for every opportunity.

I defended my bachelor's thesis on the campaign, detailing systemic issues in early detection and treatment of spinal deformities.

The campaign also supports new exercise methods, including specialized exercise for Scheuermann's kyphosis from Martin Francúz at the Bratislava IKKOS center, and pain relief methods, including alternative approaches — always emphasizing safety.

I remain available to pediatric, adolescent, and adult patients as a guide, patient ambassador, or someone who simply listens to their struggles — which I know well myself.

The campaign operates under the Scheuermann's Disease Fund, which I represent in the Czech Republic and Slovakia. Founder Doug Strott is a huge inspiration — as a patient with a late-diagnosed Scheuermann’s disease, eight surgeries, and chronic pain, he devoted his life to helping other patients.

We thank the Ministry of Health of the Czech Republic, the Ministry of Health of Slovak Republic, the Young Doctors Association, the Czech Pediatric Society JEP, the Slovak Pediatric Society, and the Slovak Orthopedic and Traumatology Society for their patronage or official support. Special thanks go to SOLEN.

Campaign costs were covered by multiple organizations:

• Charles University, Faculty of Social Sciences, Institute of Communication Studies and Journalism  
• Scheuermann’s Disease Fund  
• Municipality of Třebichovice  
• Statutory City of Kladno  
• MH Consulting s.r.o.  
• various small donors

🏆 I am deeply honored that the project received the Rector's Extraordinary Award of the Charles University and the Křesadlo Award for volunteering. It was also the first Czech or Slovak presentation selected for the World Social Marketing Conference.

My Last Chance?

There is no treatment for the degenerated discs caused by Scheuermann’s disease. Pain can only be managed, and it will worsen over time. I had lost my future.

At least, that’s what I thought.

On the recommendation of another patient, I discovered a new regenerative disc treatment. After undergoing it, his pain reduced by 95%. He recommended it to his mother and a friend, who also benefited greatly. I underwent initial diagnostics and received promising results — a 60–70% prognosis for significant improvement. The method has been developed over 20 years and is supported by studies. After this, options will likely be exhausted.

One month of treatment costs 18,000 CZK and may last up to two years. It is the only curative option, unlike physiotherapy.

Since December 2023, I have been volunteering full-time on the awareness campaign, spending most of my own funds on the campaign and diagnostics. I currently have no other way to finance treatment but through fundraising.

Your donation carries great responsibility for me

I also promise that, if treatment succeeds, I will dedicate myself full-time to social and nonprofit marketing & fundraising. What can work in this field lead to?

• Early cancer detection  
• Healthy lifestyles  
• Reducing prejudice  
• Road safety  
• Fundraising for humanitarian organizations  
• And yes, early diagnosis and treatment of spinal deformities! 

My ultimate goal is to create a new international organization that builds on the Czech-Slovak campaign experience to raise awareness of spinal deformities worldwide.

Your contribution can help more than just me

I am also here as a patient guide. Feel free to share questions or struggles with me, whether related to spinal deformities, back health, chronic pain, healthcare, or treatment advice. Contact: info@scheuermannova-choroba.cz. Phone consultations may also be possible.

Extra donations — worth it?

Any funds raised beyond the target amount will certainly not go to waste. The money will be used for the following purposes: supplementary treatment, covering the future costs of the spinal deformities awareness campaign, establishing and operating a globally active nonprofit organization, education in social and nonprofit marketing & fundraising, submitting the project to marketing and PR competitions (good results will further boost the campaign’s publicity), and other related activities aimed strictly at beneficial purposes.

I am grateful for every contribution, no matter how small, or for simply sharing the campaign 🙏

📌What are spinal deformities?

Scheuermann’s disease and idiopathic scoliosis are the two most common spinal deformities, affecting roughly 10% of the population. Early diagnosis and proper treatment are essential to minimize lifelong consequences: chronic pain, body image issues, depression, and more. Many children and adolescents do not receive timely treatment. In Scheuermann’s disease, despite being easy to diagnose, most patients go undetected due to low awareness, normalization of slouching, confusion with common poor posture, or lack of screening. A pediatrician may only superficially check an average patient every two years. Other specialties, such as orthopedics, rehabilitation, or physiotherapy, also often lack time or detailed guidance to properly identify deformities.

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Photo credits: SOLEN, Anna Jeřábková (Medidays 2025, Young Doctors), Václav Vašků (Křesadlo, HESTIA), Veronika Vachule Nehasilová (Charles University)