Thanasis Tournavitis is a 37-year-old man from Greece who lives with Duchenne muscular dystrophy. In this personal story, he shares the realities of living with complex medical needs, the challenges of accessing healthcare and disability support, and the financial and emotional burden placed on his ageing parents, who provide much of his care.
He questions the gap between the support promised by the Greek state and what families actually receive, arguing that keeping disabled people alive must also mean ensuring they can live with dignity, rights and adequate support.
I have a certified disability of 95%, a permanent tracheostomy, and I depend on mechanical ventilation 24 hours a day. I have extremely limited movement in all four limbs and need assistance with almost every physical aspect of daily life.
For much of my life, Duchenne was associated with a much shorter life expectancy. Medicine and respiratory care have allowed people like me to survive longer.
I am still here at 37. That should be a success story. But surviving longer raises another question – What happens when medicine keeps you alive, but the social system is not prepared to support the life it has helped extend?
My home is effectively a small intensive-care unit
I need mechanical ventilation every hour of every day.
I need suction equipment, tracheostomy and respiratory consumables, backup equipment, batteries, lifting equipment, an electric care bed, specialised nutrition and many other things simply to remain safe at home.
If something breaks, I cannot wait. If essential supplies run out, I cannot decide to go without them until bureaucracy catches up.
Yet despite this level of dependence, I do not have a publicly provided nurse permanently supporting me at home. When professional nursing care is needed, I pay for it privately. Most of the rest is done by my parents.
Duchenne muscular dystrophy and the absence of meaningful state support
At almost 70 years old, my parents have their own health problems, their own medical needs and their own issues that need attention. But very often they do not even have the time to deal with them. Because there is always something involving me that comes first.
A medical appointment, an equipment problem, a respiratory issue, a prescription, a phone call, paperwork, a supplier, a repair, or an emergency.
They do not go on holidays. They cannot simply decide to disappear for a week and rest. For decades, their lives have had to be organised around my survival.
My parents have fought both for decades. They did not choose Duchenne. They did not choose to become nurses, carers, technicians and administrators. They were simply parents.
But when a system leaves gaps, the family is expected to fill them. And after enough years, sacrifice stops being temporary and becomes an entire life.
I also struggle to understand why my parents’ pensions should ever be treated as though they are somehow my own financial resources.
They worked for decades to earn those pensions. That money is supposed to support their old age.
They did not spend their working lives earning a pension so that, after retirement, it could become another source for financing my disability.
They have already given me decades of unpaid care, their time, their sleep, their physical strength, their freedom, their personal lives.
My parents’ rights matter too
When the State fails to provide sufficient support and assumes that parents will simply continue paying and caring, it is not only the rights of the disabled person that are affected.
The rights of the parents are being eroded as well. A parent should not reach 70 and discover that retirement simply means continuing as an unpaid full-time carer.
My parents currently help me pay for almost all aspects of my healthcare, including doctors, physiotherapy, nursing care, medical consumables, respiratory supplies, equipment, repairs, specialised nutrition, nutritional supplements, and transportation.
These are not occasional expenses. They repeat month after month, year after year. Eventually, things that should shock you become normal.
Used equipment becomes normal. Repairing the same devices again and again becomes normal. Searching for second-hand solutions becomes normal. Trying to make supplies last becomes normal.
Even using expired consumables can become part of the reality when you are constantly trying to manage shortages, availability and cost.
None of this should be considered normal healthcare. But when your health depends on equipment and supplies, the question stops being, “What is the best solution?” And instead it becomes, “What can we find, what can we afford, and how can we make it work?”
Sometimes you become so exhausted by procedures that paying yourself seems easier than beginning another battle. That should tell us something.
When a supposedly available public benefit becomes harder to access than simply paying privately, the procedure itself has become part of the problem.
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“EOPYY covers it” does not necessarily mean I can get it
This is one of the great contradictions. Something can theoretically be reimbursed by the Greek health insurance service, EOPYY and still be extremely difficult to obtain.
First, you may have to find a supplier willing to cooperate with EOPYY. If the reimbursement is inadequate compared with the real cost, if the payment conditions are unattractive or if the bureaucracy is excessive, a private supplier may simply refuse. Then what?
The system says I am entitled to something. A reimbursement amount exists. But nobody is willing to provide it under those conditions.
If access to even a limited reimbursement depends on finding a private business willing to participate, the State must make sure that the system actually functions. Otherwise, “it is covered” becomes little more than a sentence.
Regulations change, and we are left trying to discover what happened
Procedures, requirements, reimbursement rules and regulations change, and very often the patient is expected to discover this after the fact. There is no one sitting beside my family explaining what has changed, what it means or what we should do next.
Instead, we search, call, email and ask, often receiving different answers. Sometimes, after finally understanding one procedure, we discover that something has changed and have to start again. I am a patient. I should not have to become an expert in legislation, procurement and reimbursement regulations simply to receive healthcare and disability support.
Official descriptions suggest that people with severe disabilities are surrounded by healthcare, benefits, social programmes, reimbursements, equipment and services. But come into my home and see who pays for the doctors, physiotherapy, nursing care, medical consumables, specialised nutrition and supplements, equipment repairs and spare parts. See who stays awake during respiratory problems, navigates changing regulations and provides care every day and night. Far too often, the answer is my family and me.
I am not saying that literally nothing is provided. I am saying there is an enormous difference between what the system claims to provide and what reaches the patient in a usable form. Somebody has to pay for that difference, financially, physically and emotionally. My parents pay with years of their lives.
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We are left in the dark about palliative care and treatment in Greece
What exactly is available to an adult with advanced Duchenne? Who explains palliative care, coordinates pain management, respiratory support, nutrition and long-term planning, or provides information about possible treatments and specialised centres? Too often, patients must discover these things themselves. When information is not transparent, it creates the feeling that those who know the right specialist, institution or administrative pathway have an advantage.
No seriously ill patient should have to wonder whether access depends on knowing the right person. Information should be public, clear and equally accessible.
Since the economic crisis and austerity years beginning around 2011, families like mine have faced years of pressure. For someone with severe disability, austerity is not an abstract economic concept. You cannot reduce your need to breathe, postpone your disability or tell a progressive disease that the country is experiencing financial difficulties.
I am not asking for privileges, but for a system that works: clear rules, accessible information, real social services, professional care and access to treatment without forcing families to finance and organise almost everything themselves.
I am 37 years old. Medicine has helped me survive Duchenne longer than many once expected, but survival alone cannot be the measure of success. My parents should be allowed to grow old as people, not only as my carers. I should be able to live as a citizen with rights, not simply as a patient whose family must solve whatever the system leaves unresolved.
Keeping someone alive is not enough. A civilised society must also ask how that person is being allowed to live.
Have you experienced similar challenges accessing healthcare, disability support or financial assistance? Share your story and experiences in the comments box, on social media or contact us to share your personal story.