{"id":19512,"date":"2026-05-27T18:51:35","date_gmt":"2026-05-27T14:51:35","guid":{"rendered":"https:\/\/medscriptum.org\/?p=19512"},"modified":"2026-06-03T01:58:35","modified_gmt":"2026-06-02T21:58:35","slug":"interview-with-can-ekinci-co-founder-of-dmdwarrior-com-institutional-and-clinical-aspects-of-managing-duchenne-muscular-dystrophy-in-turkey","status":"publish","type":"post","link":"https:\/\/medscriptum.org\/en\/interview-with-can-ekinci-co-founder-of-dmdwarrior-com-institutional-and-clinical-aspects-of-managing-duchenne-muscular-dystrophy-in-turkey\/","title":{"rendered":"An Analysis of Institutional and Clinical Frameworks in the Management of Duchenne Muscular Dystrophy in Turkey: An Interview with Can Ekinci, Co-Founder of DMDWarrior.com"},"content":{"rendered":"

The Turkish healthcare system employs a multi-component strategy for the management of Duchenne Muscular Dystrophy (DMD), integrating pharmacological therapy, systematic clinical monitoring, and state-sponsored social support programs. To conduct a comprehensive analysis of the institutional structure and practical implementation of this system, we interviewed Can Ekinci<\/span>, co-founder of DMDWarrior.com<\/a>, a Turkey-based DMD support platform, and EMEA regional coordinator.<\/p>\n

The interview examines the organizational and clinical aspects of DMD management in Turkey, the specifics of healthcare infrastructure, the regulatory framework for pharmaceutical provision, funding models for therapeutic and rehabilitative services, systemic home-care mechanisms, and the structural and socio-economic challenges faced by patients and their families in accessing medical services.<\/p>\n

Could you introduce your organization’s core mission and provide information on the services you offer to patients with Duchenne Muscular Dystrophy and their families?<\/b><\/span><\/p>\n

DMDWarrior.com was founded in November 2024 by a Turkish father whose son was diagnosed with Duchenne Muscular Dystrophy (DMD). The primary motivation for establishing the organization was the series of difficulties he personally encountered while searching for reliable, understandable, and encouraging medical information. This personal experience clearly highlighted the systemic challenges related to informational accessibility faced by DMD patients and their families.<\/p>\n

Many people globally do not live in large urban centers, lack specialized medical education, do not speak English, or do not have the capacity to fully comprehend complex scientific publications and medical statements. DMDWarrior.com was created precisely to reduce these informational barriers. The platform publishes verified, evidence-based information in the world’s 10 most widely spoken languages, significantly increasing global access to disease-related resources.<\/p>\n

DMDWarrior.com is not an association, a foundation, or a donation-based organization. All operational, administrative, and publishing costs of the platform are voluntarily covered by its administrators. A fundamental reason for refusing donations is to protect the organization’s editorial independence and freedom of expression. We recognize that collaboration with pharmaceutical companies or other stakeholders could potentially influence the objectivity of the materials published in the future, and avoiding this is our principled decision.<\/p>\n

Currently, the organization does not provide direct financial assistance to cover expenses related to medical equipment, therapy, or treatment for DMD patients and their families. Instead, we focus on advocacy and awareness-raising. With a monthly engagement\/activity rate of approximately 750,000 users across social media, we strive to increase public awareness and call upon pharmaceutical companies, governments, and healthcare authorities to improve access to treatment and care\u2014through the reduction of prices for approved medications, the acceleration of drug approval processes, and the expansion of reimbursement mechanisms.<\/p>\n

Furthermore, the organization publishes the latest scientific articles and reports, sharing relevant findings with official institutions to facilitate the improvement of treatment quality and increase access to supportive medical services for DMD patients.<\/p>\n

What are the primary logistical and daily difficulties faced by DMD patients and their families, particularly regarding access to essential medical equipment, rehabilitation therapies, and daily mobility aids?<\/b><\/span><\/p>\n

The Turkish healthcare system covers only a very limited portion of the medical equipment required for DMD patients. Additionally, supportive therapies such as physical therapy and hydrotherapy are often limited due to session duration constraints and reimbursement policies. However, as you know, DMD is a progressive condition that requires continuous and long-term rehabilitative care.<\/p>\n

In cases where families wish for their children to undergo high-quality physical therapy or hydrotherapy under the supervision of professionals specializing in neuromuscular disease treatment and rehabilitation, they typically have to cover these costs independently. Moreover, specialized rehabilitation and hydrotherapy centers, as well as DMD-oriented care services, are not available in all major cities in Turkey. For families living in small towns and rural settlements, access to these services is extremely limited or non-existent. Unfortunately, access to quality medical care is often directly linked to their financial capabilities.<\/p>\n

Daily mobility represents one of the most significant challenges for DMD patients. Even when a patient uses an electric wheelchair, independent movement in daily life is often extremely difficult. In Turkey, a significant portion of sidewalks, streets, and public infrastructure remains inadequately adapted to the needs of persons with disabilities. Although public transportation is technically accessible, its utility is lost if the patient cannot safely and independently reach the bus stop or station.<\/p>\n

Without a personal vehicle, free and safe movement is often very difficult for a teenager or an older child with DMD. Although the Turkish government provides certain tax incentives for families of persons with disabilities when purchasing a vehicle, families remain limited by specific regulations and criteria that define the types of vehicles they can purchase. As a result, even financially secure families may not have the opportunity to choose the vehicle best suited to their child’s needs.<\/p>\n

The Turkish medical sector possesses highly qualified personnel in pediatric neurology, physical medicine, rehabilitation, and cardiology. Also noteworthy is the high professional competence of occupational therapists who have long-standing experience in the management of neuromuscular diseases and the implementation of patient-centered rehabilitative services.<\/p>\n

Despite this strong clinical and professional potential, a range of internationally recognized therapeutic agents approved by regulatory bodies remains unavailable in practice. Specifically, medications such as Agamree, which has obtained authorization from the European Medicines Agency (EMA), are currently not integrated into reimbursement programs within the Turkish healthcare system, which significantly limits real access for patients.<\/p>\n

As a result, many patients remain forced to use traditional corticosteroids, which, while slowing the progression of the disease, may cause significant long-term side effects. Clearly, these challenges are closely linked to the economic capabilities of each country. According to official data, approximately 7,500 people live with DMD\/BMD in Turkey. As long as pharmaceutical companies maintain extremely high pricing policies for innovative therapies, access to modern treatment will remain a serious challenge for countries like Turkey.<\/p>\n

In other words, no matter how experienced and dedicated our doctors are, until internationally approved therapies become simultaneously accessible and financially reimbursable in Turkey and similar countries, the DMD community will continue to be unable to progress at the pace that patients urgently require.<\/p>\n

What constitutes the minimum standard of medical and infrastructural care necessary to maintain the health, functional independence, and quality of life of a child with Duchenne Muscular Dystrophy?<\/b><\/span><\/p>\n

In September 2025, the Turkish Ministry of Health published a comprehensive clinical guideline for the management of Duchenne Muscular Dystrophy (DMD). From a medical and theoretical perspective, this document reflects modern standards of multidisciplinary care and encompasses essential clinical, rehabilitative, and psychosocial components of DMD management. Nevertheless, the consistent and universal implementation of these standards in daily clinical practice remains a subject of ongoing analysis and discussion.<\/p>\n

For instance, the “Educational Support” section of the document states: “DMD may limit a student’s ability to have continuous access to the educational environment. Consequently, competent institutions, in accordance with the individual’s age and educational level, must provide the necessary adaptations to maximize their functional engagement alongside their peers.” Although this provision aligns with best practice standards, its implementation is often inconsistent.<\/p>\n

In Turkey, many families report that children with DMD frequently experience bullying by peers in schools, while a segment of the teaching staff remains insufficiently informed about the clinical, functional, and psychosocial characteristics of the disease. It is precisely to reduce these informational and educational gaps that DMDWarrior.com was established; it publishes easily accessible resources, including the “DMD School Guide” and the “DMD Guide for Teachers,” which are intended for both educational personnel and the general public.<\/p>\n

Although Turkish medical personnel, particularly in the fields of pediatric neurology, physical medicine, and rehabilitation, as well as other relevant specialties, possess high professional competence, and national clinical guidelines exist, the quality of medical service in practice is often significantly dependent on the family\u2019s socio-economic status.<\/p>\n

For example, regarding nutritional support, the intake of Omega-3-rich products is considered a significant component of adjunctive therapy for patients with Duchenne Muscular Dystrophy. However, existing socio-economic factors in Turkey and the limited purchasing power of the population often hinder full adherence to the recommended nutritional regimen. Specifically, the regular inclusion of fish in the diet is an expensive endeavor for the majority of families. Under such conditions, families often turn to Omega-3 supplements, only a small portion of which are funded by the healthcare system, while access to high-quality preparations requires additional financial resources.<\/p>\n

This situation reflects a broader, systemic problem characteristic of many countries’ healthcare systems: despite the formally high quality of clinical guidelines and standards, their realization in real-world practice is often constrained by insufficient financial and institutional resources. Consequently, a significant imbalance often emerges between recommended clinical standards and the actual capacity for their practical implementation, which becomes particularly evident in the context of chronic and progressive diseases, including DMD.<\/p>\n

What is the current standard of treatment for Duchenne Muscular Dystrophy in Turkey, and how does it correspond to international guidelines?<\/b><\/span><\/p>\n

Regarding harmonization with international standards and clinical guidelines, the officially published DMD management guidelines in Turkey are distinguished by high academic precision and comprehensive content. The Turkish healthcare system adequately reflects the needs for multidisciplinary management of DMD patients and includes critical components such as neurological monitoring, principles of corticosteroid therapy application, regular assessment of cardiac and respiratory function, physical rehabilitation, nutritional support, psychosocial interventions, and recommendations for educational adaptation.<\/p>\n

However, the fundamental issue transcends the scientific precision of the guidelines themselves and relates to their actual implementation in clinical practice. Based on existing experience and observations, the uniform and systemic execution of this theoretical framework in practice remains a significant challenge.<\/p>\n

In this context, one structural difficulty is the limited institutional effectiveness of patient advocacy mechanisms focused on DMD. Although there are numerous organizations protecting patient rights in the country, their scope of activity is largely focused on raising public awareness and media campaigns. Yet, despite the high importance of public information, these initiatives cannot achieve the desired result if they are not transformed into political instruments aimed at reforming healthcare policy, optimizing financial reimbursement models, and systemically improving access to medical services. Consequently, a critical imbalance is observed between social activism and institutional\/structural changes.<\/p>\n

Furthermore, despite years of advocacy attempts, a range of internationally approved therapeutic agents remains not fully integrated into the reimbursement mechanisms of the Turkish healthcare system, which practically limits their accessibility to broad groups of patients. An additional problem is the issue of transparency and accountability, including the insufficient practice of detailed and public reporting by patient organizations regarding the management and distribution of financial resources. Effective patient advocacy, in the modern sense, requires not only awareness-raising but also strategic political engagement, transparent governance, and a results-oriented approach.<\/p>\n

In clinical practice, corticosteroid therapy remains the primary and most widely accessible treatment standard for DMD in Turkey. However, access to significant components of modern multidisciplinary management\u2014including regular and intensive physical therapy, hydrotherapy, nutritional support, dietary supplements, respiratory support technologies, and mobility-related assistive devices\u2014is often directly dependent on the family\u2019s socio-economic capabilities.<\/p>\n

This creates systemic inequality, under which clinically recommended standards formally exist, yet their universal accessibility is not guaranteed. Consequently, high-income families more often succeed in accessing complex rehabilitative services, innovative assistive technologies, and optimized nutritional interventions, while socially vulnerable groups often fail to maintain even the minimum recommended rehabilitation regimen.<\/p>\n

Thus, when evaluating DMD management in Turkey, it is necessary to make a clear distinction between the theoretically high quality of clinical guidelines and the real limitations of their implementation in practice. While the scientific framework largely aligns with international recommendations, there remain significant structural flaws at operational, financial, and systemic levels that substantially affect equitable access to treatment, continuity, and the overall quality of services.<\/p>\n

How accessible are multidisciplinary neuromuscular disease centers across the country?<\/b><\/span><\/p>\n

The number of multidisciplinary neuromuscular centers in Turkey is critically insufficient given the actual needs of patients with Duchenne Muscular Dystrophy. While there are specialized clinics and qualified medical personnel across the country, access to the coordinated and multidisciplinary care essential for the management of the dystrophy remains a significant barrier for many families.<\/p>\n

Patient families report that visits to specialized neuromuscular centers are scheduled months, and in some cases, almost a year in advance. Under the conditions of a rapidly progressive pathology like DMD, this waiting regime is particularly alarming. A one-year wait for diagnostic assessment, monitoring, and multidisciplinary studies is not merely an administrative flaw; this fact negatively impacts the patients’ physical condition and the psychosocial well-being of their families.<\/p>\n

The progression of DMD does not pause while waiting for a medical consultation. Such a loss of time contributes to muscle atrophy, orthopedic complications, decline in respiratory function, and worsening cardiac risks. Concurrently, parents experience acute emotional stress, uncertainty, and feelings of helplessness, which are directly linked to the difficulty of accessing specialized care for their children.<\/p>\n

Among structural problems, the unequal geographic distribution of medical expertise is also noteworthy. Specialized centers are largely concentrated in large cities, which significantly restricts access to services for individuals living in regions, small towns, and socio-economically vulnerable settlements. Covering long distances for the purpose of periodic multidisciplinary monitoring transforms into an additional financial, physical, and emotional burden for families already battling a chronic disease.<\/p>\n

This is precisely why independent advocacy platforms, such as DMDWarrior.com, fulfill an essential function as mechanisms for civil monitoring and institutional accountability. These platforms contribute to reducing information asymmetry, identifying systemic gaps, and integrating patient needs into a broader public and political agenda.<\/p>\n

Moreover, we believe that families of those living with DMD must actively demand the highest standards of care from both state institutions and the organizations deemed to represent them. It is unacceptable to perceive inadequate systemic practice and unjustified delays as an unalterable reality. Timely, multidisciplinary, and evidence-based care should not be a privilege\u2014it is a fundamental right to health for every child living with DMD.<\/p>\n

What medications and therapies are currently officially approved and widely used in Turkey for the treatment of DMD, and how are they integrated into the patient’s multidisciplinary care plan?<\/b><\/span><\/p>\n

Currently, gene therapy and exon-skipping methods are not available for the treatment of Duchenne Muscular Dystrophy in Turkey. Although a number of innovative therapies are approved in the United States and many European countries, these treatment approaches have not yet been integrated into the standard, reimbursable medical services of the Turkish healthcare system. Consequently, the therapeutic approach in the country is primarily based on supportive and symptom-management strategies aimed at slowing the progression of the disease, improving the quality of life, and maintaining life for as long as possible.<\/p>\n

The cornerstone of DMD treatment in Turkey is glucocorticoid (corticosteroid) therapy. Steroids are widely used to slow the progression of the disease, preserve muscle strength and respiratory function, and prolong independent ambulation, which can be extended by an average of several years. The most frequently prescribed drugs are deflazacort and prednisolone. Despite their known long-term side effects, corticosteroids remain the most accessible and standardized pharmacological intervention for DMD patients throughout the country.<\/p>\n

Alongside medical treatment, constant rehabilitation and the management of physical activity are essential components of patient care. Passive stretching exercises are also regularly used to prevent muscle contractures (limitation of joint movement caused by the shortening of muscles, tendons, or ligaments and loss of elasticity) and joint rigidity. In many cases, nighttime orthotic devices, such as ankle-foot orthoses (AFOs), are integrated into the treatment plan to maintain proper joint positioning and functional mobility for as long as possible.<\/p>\n

Simultaneously, the treatment approach in Turkey is typically based on the principle of “protective rehabilitation.” Although supportive therapies aim to maintain muscle function, high-intensity or high-load muscle exercises that could damage vulnerable muscle fibers are strictly limited. Families are typically advised to focus on controlled, low-load, and professionally supervised rehabilitation programs.<\/p>\n

Cardiac monitoring is one of the most critical components of the multidisciplinary management of DMD. Since Duchenne Muscular Dystrophy progressively damages the heart muscle and can lead to cardiomyopathy, patients undergo regular echocardiographic (ECHO) assessments, typically starting around age 10, or earlier if clinically indicated. In many cases, cardioprotective medications, such as ACE inhibitors, are prescribed at an early stage to delay or reduce disease-related cardiac complications.<\/p>\n

Respiratory management becomes increasingly important as the disease progresses. Since respiratory muscles weaken over time, regular pulmonary function testing is part of standard monitoring. When necessary, cough-assist devices and non-invasive ventilation systems, such as BiPAP, are integrated into the treatment plan to support respiratory function and improve quality of life.<\/p>\n

At a theoretical level, the multidisciplinary care model in Turkey aims to combine pediatric neurology, cardiology, pulmonology, physical medicine and rehabilitation, orthopedics, nutritional support, psychological assistance, and respiratory care into an integrated, coordinated system. However, in practice, access to this complex model depends significantly on geographic location, institutional capacity, and the socio-economic status of the families.<\/p>\n

Thus, while clinical competence in DMD management in Turkey is high, access to innovative therapies and fully integrated multidisciplinary care remains fragmented and uneven, especially for families living in regional areas or those with limited economic means.<\/p>\n

Which of the listed treatments and therapies are funded by state healthcare programs?<\/b><\/span><\/p>\n

In Turkey, the core components of standard medical management for DMD are funded within the framework of the state healthcare system. Specifically, the state subsidizes corticosteroids, such as deflazacort and prednisolone, which are considered the cornerstone of pharmacological therapy. Furthermore, the universal healthcare system covers routine consultations and clinical assessments in specialized disciplines such as pediatric neurology, cardiology, and pulmonology.<\/p>\n

The national healthcare system provides the majority of patients with procedures such as cardiac and respiratory monitoring, laboratory tests, and standard hospital investigations, which form the basis for disease management and clinical surveillance.<\/p>\n

Nevertheless, systemic challenges emerge at the stage of practical implementation of clinical recommendations. Many supportive therapies recommended by modern standards of multidisciplinary care\u2014including hydrotherapy, specialized rehabilitation programs, intensive physical therapy courses, occupational therapy, individual mobility aids, and certain nutritional supplements\u2014are only partially covered under state funding or are not subject to reimbursement at all.<\/p>\n

As a result, real access to these services is often directly dependent on the patient’s family’s socio-economic capabilities. For example, a doctor might recommend regular hydrotherapy or intensive rehabilitation sessions; however, if these services are available only in the private sector or exceed state reimbursement limits, families are compelled to cover additional costs either fully or partially out of pocket. For many families, especially against the backdrop of the current economic crisis, maintaining the continuity of such long-term therapies becomes significantly difficult.<\/p>\n

It is also noteworthy that private health insurance systems in Turkey generally do not provide comprehensive financial coverage for many supportive therapies and long-term rehabilitative services related to DMD. In practice, this leaves families in a financially vulnerable position, especially as the disease progresses and needs become more complex and continuous.<\/p>\n

Consequently, although the Turkish healthcare system provides funding for many essential medical investigations and standard medications, there remains a significant dissonance between clinical recommendations and actual financial accessibility. As a result, the financial burden of high-quality services is often shifted partially or fully onto the families themselves.<\/p>\n

What types of state-funded home-care support programs exist in Turkey for patients with Duchenne Muscular Dystrophy who have limited mobility?<\/b><\/span><\/p>\n

In Turkey, there are several state-supported home-care mechanisms for individuals with DMD, especially for patients with severe mobility limitations or respiratory complications. Although these systems provide essential basic assistance, in practice, there remain significant limitations, bureaucratic barriers, and inconsistencies in the quality of implementation that many families encounter in their daily reality.<\/p>\n

One of the primary services is the Ministry of Health\u2019s Home Healthcare Services program. In the advanced stages of DMD, when patients lose the ability to move independently, become bedridden, or require respiratory support (e.g., non-invasive ventilation\u2014BiPAP, or cough-assist devices), medical monitoring can be provided at home.<\/p>\n

This service includes: physician visits, collection of biological samples (blood, urine) for laboratory analysis, prescription renewals, extension of medical reports, pressure ulcer management, catheter replacement, and basic physiotherapy consultations. In principle, the criteria for accessing this service are relatively clear: families are typically required to provide a document issued by a medical board confirming that leaving the home for the patient is medically difficult, high-risk, or practically impossible.<\/p>\n

Although the system is beneficial, families frequently report that the quality and frequency of services vary depending on the region, local hospital resources, and personnel availability. In some regions, access to experienced multidisciplinary specialists is restricted, resulting in families receiving only minimal or basic support, which is insufficient given the complex and progressive nature of DMD.<\/p>\n

The second important mechanism is the home-care financial assistance program administered by the Ministry of Family and Social Services. This is a monthly cash benefit provided to a first-degree relative\u2014typically a parent or family member\u2014who provides full-time care for a person with a severe disability, including patients with DMD.<\/p>\n

However, the program’s criteria are stringent and are often a subject of criticism by families. To receive the benefit, the patient must be officially classified as “fully dependent” in the disability assessment report. Additionally, the per capita income of family members must not exceed the threshold established by law. This income-based approach often causes dissatisfaction among families who may formally exceed the threshold slightly, yet still face significant financial difficulties due to treatment costs.<\/p>\n

Applications can be submitted at regional social service centers, as well as electronically via Turkey’s e-Government system. Nevertheless, according to family experiences, the process is often characterized by bureaucratic complexity, emotional stress, and a significant reliance on the interpretability of administrative decisions.<\/p>\n

The third important direction is the reimbursement of medical equipment and consumables with the support of the Social Security Institution (SGK). Devices that become critically necessary in the later stages of disease progression\u2014such as BiPAP non-invasive ventilators, cough-assist devices, aspirators, oxygen concentrators, and wheelchairs\u2014can be partially reimbursed based on specialist recommendations and official documentation from a medical board.<\/p>\n

Similarly, hygienic materials, such as adult diapers, may also be partially funded within monthly quotas, provided the family presents the appropriate medical documentation.<\/p>\n

However, one of the most critical aspects of the public system is the fact that the reimbursement amount often fails to reflect real market prices, especially under conditions of economic instability and inflation. As a result, families often have to pay a significant difference out of pocket to obtain higher quality or more durable equipment.<\/p>\n

Overall, Turkey has an established institutional framework for DMD home-care support, and these programs provide essential assistance to many families. However, there remains a significant imbalance between the theoretical existence of the system and its practical implementation. Many families continue to grapple with financial pressure, regional inequality, and administrative barriers.<\/p>\n

From your organization’s perspective, which systemic, policy-oriented, or infrastructural improvements do you consider most imperative to ensure fair and evidence-based care for individuals with DMD?<\/b><\/span><\/p>\n

In the view of DMDWarrior.com, ensuring fair and evidence-based care for individuals with Duchenne Muscular Dystrophy in Turkey requires not only the introduction of advanced medical breakthroughs but also deep systemic, political, and infrastructural reforms. Although Turkey has highly qualified doctors and increasingly comprehensive clinical guidelines available, the current system continues to force families to operate in a fragmented, bureaucratized, and economically unequal environment.<\/p>\n

One of the primary systemic needs is the creation of a centralized national DMD registry. As of today, there is no integrated, dynamic database in Turkey that systematically records types of genetic mutations, disease stages, clinical outcomes, and the long-term needs of patients. Such a system is critically important both for the strategic planning and budgeting of healthcare programs and for improving patient access to international clinical trials and innovative therapies. Without accurate national data, developing sustainable strategies for managing rare diseases is practically impossible.<\/p>\n

Furthermore, we believe that families should not be left alone with healthcare and social support systems after receiving a diagnosis. Under the auspices of the Ministry of Health, a “Case Coordination” model should be introduced, where each family is assigned a personal coordinator. This structure would ensure the coordinated management of medical visits, rehabilitation services, educational adaptation, protection of social rights, and the process of obtaining equipment, thereby avoiding the necessity for parents to interact with various institutions independently.<\/p>\n

From a political perspective, one of the most significant reforms would be the inclusion of DMD in the national newborn screening program. Early diagnosis is the most effective mechanism for managing Duchenne Muscular Dystrophy. Identifying the disease before clinical manifestation would allow for the timely commencement of physical therapy, corticosteroid treatment, respiratory monitoring, nutritional management, and psychological counseling, all of which directly impact patient life expectancy and quality of life.<\/p>\n

Access to innovative therapies is also critically important. Treatment methods approved by the FDA and EMA\u2014including exon-skipping and gene therapy\u2014are limited in Turkey due to delayed reimbursement and bureaucratic barriers. We believe that reimbursement processes must become more operational, flexible, and patient-centered. Specialized scientific commissions need to be established to evaluate benefit and risk based on the principles of evidence-based medicine, ensuring that patients do not lose time critical for treatment while waiting for administrative decisions.<\/p>\n

On an infrastructural level, it is necessary to increase the number of neuromuscular disease centers and ensure their equitable geographic distribution. The existing centers are insufficient and concentrated only in large cities, creating inequality for families living in rural or small-town settings. Multidisciplinary care should not depend on geographic location and economic privilege.<\/p>\n

Moreover, each neuromuscular center should be legally mandated to have an integrated multidisciplinary team: neurologists, pediatric neurologists, physical therapists, cardiologists, pulmonologists, nutritionists, psychologists, and rehabilitation specialists, who will ensure the effective implementation of a model of coordinated and long-term care.<\/p>\n

Also, modernization of the home-care infrastructure is needed. Currently, home-care services are limited to routine procedures. Progressive neuromuscular diseases like DMD require specialized systems, such as: mobile multidisciplinary teams for respiratory management, professional pulmonary rehabilitation, cough-assist therapy, and intensive home-care physiotherapy.<\/p>\n

Finally, the issue of accessibility must be solved not only at the clinical level but also in social space. Educational institutions, infrastructure, and public transportation in Turkish cities often do not meet international accessibility standards. An individual with DMD who uses an electric wheelchair should be able to independently obtain an education, engage in social life, and move around without the constant supervision of a caregiver.<\/p>\n

Ultimately, we believe that a fundamental transformation is necessary for the Turkish healthcare system: moving from a model focused solely on “life maintenance” to a holistic model focused on quality of life. Patients with DMD must be guaranteed a dignified, independent life, equal opportunities, and full participation in public life.<\/p>\n","protected":false},"excerpt":{"rendered":"

The Turkish healthcare system employs a multi-component strategy for the management of Duchenne Muscular Dystrophy (DMD), integrating pharmacological therapy, systematic clinical monitoring, and state-sponsored social support programs. To conduct a comprehensive analysis of the institutional structure and practical implementation of this system, we interviewed Can Ekinci, co-founder of DMDWarrior.com, a Turkey-based DMD support platform, and […]<\/p>\n","protected":false},"author":29,"featured_media":19511,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1699,1596,1653,1631,1594,1635,1665,1647],"tags":[5813,5811,4980,5812],"class_list":["post-19512","post","type-post","status-publish","format-standard","has-post-thumbnail","category-for-patients","category-internal-medicine","category-interview","category-neurology","category-news","category-pediatrics","category-public-health","category-rehabilitation","tag-dmd","tag-dmd-treatment-in-turkey","tag-duchenne-muscular-dystrophy","tag-neuromuscular-diseases"],"acf":[],"_links":{"self":[{"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/posts\/19512","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/users\/29"}],"replies":[{"embeddable":true,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/comments?post=19512"}],"version-history":[{"count":2,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/posts\/19512\/revisions"}],"predecessor-version":[{"id":19519,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/posts\/19512\/revisions\/19519"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/media\/19511"}],"wp:attachment":[{"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/media?parent=19512"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/categories?post=19512"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medscriptum.org\/en\/wp-json\/wp\/v2\/tags?post=19512"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}