Author: s.stylianou

Ablebook collaborates with Metropolis Mall for More Accessibility and Inclusion

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Ablebook is an application that provides information and services related to the accessibility of persons with disabilities (PWDs) in urban centers and villages across Cyprus. Through the application, users can find information about accessible locations, view photos of these places, communicate with businesses, and report issues they encounter in a particular location. Additionally, the application includes information about public parking spaces for PWDs throughout Cyprus.

Ablebook is an application that provides information and services related to the accessibility of persons with disabilities (PWDs) in urban centers and villages across Cyprus. Through the application, users can find information about accessible locations, view photos of these places, communicate with businesses, and report issues they encounter in a particular location. Additionally, the application includes information about public parking spaces for PWDs throughout Cyprus.

The first feature of Ablebook is an interactive map that allows users to select their desired destination, showing them the most accessible route. They can also view available accessibility facilities at each location through photos and directly communicate with businesses in case of need.

The second feature, known as Ablecard, is a membership card exclusively for people with disabilities. Through this card, users can enjoy additional privileges at businesses collaborating with Ablebook, such as discounts and special offers.

The third feature of the application, the Kids section, provides information about accessible spaces where children with disabilities can engage in sports and various activities.

The last available feature is the Ablebook Portal, which allows businesses and municipal authorities to manage their locations within the application and update their content. This ensures that accessibility information is always up-to-date and compliant with standard specifications.

The collaboration between Ablebook and Metropolis Mall is a step towards creating a society of equality and inclusion. With the accessible facilities and services offered, Metropolis Mall sets an example for other businesses to follow, making our community more accessible for everyone.

Talking to children about disabilities

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The chapter on “disability” is large, and it might be challenging to explain to children. It requires patience and delicate handling. Why someone is disabled, what this means for them and those around them, how it happened, and why, how they feel, and how different their life is – these are all important questions to address.

And ultimately, how should we behave towards them, differently or “normally”? Children have a natural curiosity and often express thoughts and words without filtering them. It’s important to discuss the topic of disabilities with them and help them better understand that there are people around us who speak, behave, or move a little differently.

People with special abilities. This could even apply to our own child who might wonder why they are not like the other children. It’s important to recognize and emphasize that being different is not a bad thing; quite the opposite. However, we should teach our children not to use words that belittle, single out, or target a person to describe their disability. Apart from being impolite, it lacks understanding and empathy. Just as our child is hurt when they are teased, spoken to rudely, or targeted, the same goes for other children and adults.

The points to emphasize when explaining to your child what a disability is or what it means are:

  1. Some people are born with disabilities, or they may experience an injury or accident during their lifetime and may not return to their previous state.
  2. A physical disability does not automatically mean a cognitive disability! Make it clear to children that someone’s body may be different, but their mind, thoughts, and emotions remain alert.

People with disabilities are not sick, and in no case is this “difference” contagious.

Explain to children that sometimes people with disabilities may use special equipment. They might have a wheelchair, crutches, wear hearing aids, etc.

Show them the designated parking spots, specially designed sidewalks, and support bars. Teach children that we should respect these places a little more, and in no case should we exploit them, violate them, or block access with our bicycles or vehicles.

Source: Φilenews

“They tied a child’s wheelchair with a rope” – Serious allegations before the Parliament

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The strong concern and anxiety have been raised regarding what was heard in front of the Parliament, concerning the way and means of transporting children with disabilities. There were reports of a disabled wheelchair being tied with a rope inside a bus that was transporting students to and from school. Furthermore, the absence of clear legislation was presented as the perfect excuse for government services to justify the unjustifiable.

The Human Rights Committee, in response to a letter from Kostas Groutidis in which he explained the ordeal his son went through to attend school trips with his classmates during the previous school year, opened the issue of violations against children with disabilities within school units.

Mr. Groutidis mentioned in his letter that during the first school trip of the previous school year, the children were transported by a bus with only one seat for a wheelchair, but there were two children, resulting in his son being tied incorrectly and, during a sudden stop, falling off the seat. As for the second school trip, Mr. Groutidis did not allow his child to board the bus, as there was no room for two children, ultimately transporting him to the excursion location himself. A location that was not accessible.

The problems with the transportation of children with disabilities have also been highlighted by the President of the Association “Agalia Elpida,” Youla Pitsiali, who stated that this issue should have been discussed for years. She explained that the first violation against these children is the violation of their right to access education since, as she pointed out, these children are subjected to an evaluation by third parties to decide, without the children’s and their families’ input, whether they should be placed in mainstream classes or not. “They prohibit access to the classrooms, and we let it happen because there is no legislation. Then parents are discouraged from sending their children to school because they are told that they will be mocked, that there are no examination essays, and we let them be bullied.”

Mr. Augustinos expressed his dismay at the lack of legislation to address these specific issues and called on the Parliament to take action, emphasizing that it is time for decisions to be made and initiatives to be taken.

On her part, the President of the Association “Agalia Elpida,” Youla Pitsiali, in her statement, mentioned that this issue should have been discussed for years. She explained that the first violation against these children is their exclusion from education since, as she pointed out, these children are subjected to evaluations by third parties to decide, without the children’s and their families’ input, whether they should be placed in mainstream classes or not. “They prohibit access to the classrooms, and we let it happen because there is no legislation. Then parents are discouraged from sending their children to school because they are told that they will be mocked, that there are no examination essays, and we let them be bullied.”

Regarding the issues with buses, Ms. Pitsiali noted that it has been a problem for years, and in 2017, with the initiative of the then-president of the Federation of Parents of Municipal Education, Morfaki Solomonides, a program for accessible buses was implemented because there were no buses to meet the needs, and parents had to pay. As she pointed out, the company that won the bid stated that it was at the disposal of the schools to provide buses for children with disabilities for two years, during which the pilot program was implemented, and there were no major problems and significant benefits were realized. “All students were transported together in large buses. We don’t want the children to be transported in small buses but in large ones. The program was stopped, and it didn’t proceed. The Ministry of Education should tell us why it was stopped. For five years now, we have been saying that there should be legislation for inclusive education.”

Taking the floor, the President of the Cyprus Confederation of Organizations of the Disabled (CCOD), Christakis Nicolaides, noted that they have submitted a memorandum regarding the inequalities faced by children with disabilities in all areas. He emphasized that there are laws and regulations for mass transportation, both public and private, that must be accessible. “The specifications exist, and there are EU specifications. Refusing to accept that there is a problem and that there are ways to solve it will not help. From July until now, we have had 70 complaints. There was a case where a child was not granted a ramp to enter his home, and the Court ruled in favor of the child. There are complaints about the transportation of children; in Paphos, they left children with autism at school and did not take them on the excursion.”

The Response of the Ministry of Transportation

In response to what Mr. Groutidis reported, Mr. Andreas Nikiforou, the Head of the Directorate of Public Passenger Transport and Senior Officer of Public Transport at the Ministry of Transportation, emphasized that it was the first time he had heard about what Mr. Groutidis mentioned. He clarified that this was a school trip and not public transportation. He stated, “We are talking about a private company that has a contract with the school and the principal. Understanding that the vehicle was legal, it had passed the MOT (Motor Vehicle Inspection). The vehicle was suitable, but it did not have an extra seat for the second wheelchair.”

Mr. Nikiforou pointed out that during the contract negotiation, the school’s management should have requested a vehicle with a second seat or asked for a second vehicle. He also emphasized that it was the responsibility of the school’s management to document the needs. He further mentioned a meeting that took place at the Ministry of Transportation the previous week, during which it was decided to create a list of essential safety documents that companies must have for buses.

Statements from Educators and Parents

Taking the floor, Mr. Dimitris Taliadoros, the President of OELMEK (Secondary Education Teachers’ Federation), highlighted that requests for transportation services are made by the school’s management at the beginning of the school year, taking into account the needs of each unit. He noted that there are special buses for excursions. Regarding the responsibility of school administrations, Mr. Taliadoros pointed out that they do not have the specifications for vehicles; only the companies do, and they provide quotations.

“In the past, the police used to conduct inspections, but now the responsibility lies with the schools. What do the schools check? Whether the vehicles have permits, have passed inspections, and are safe.”

On her part, Ms. Myria Vasileiou, the President of POED (Pan-Cyprian Parents’ Association), suggested that at the beginning of the school year, contacts are made with bus companies to find the best solution and that the company is informed if there are children with disabilities. Regarding specifications and criteria, her response was emphatic.

“Our diplomas say ‘teacher,’ not ‘engineer’ or ‘police officer.’ It is not our responsibility to inspect vehicles; we do not have the knowledge.”

In his statement, Mr. Loizos Konstantinou, the President of the Federation of Parents of Secondary Education, noted that their position is firm. “The right to education is equal for all children, and the state should provide it.”

Regarding buses, Mr. Konstantinou emphasized the need to create a registry for school buses to ensure order. He also stressed the importance of creating the list immediately, so schools know what to request from the companies.

Source: Reporter

USA: Only 21% of people with disabilities were employed in 2022.

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How employers can reduce biases in hiring people with disabilities

Only 21% of people with disabilities were employed in the USA in 2022, as reported by CNBC.

According to the Centers for Disease Control and Prevention, one in four adults in the United States has a disability that affects their major life activities, including challenges in hearing and vision, mobility, cognition, independent living, and engaging in activities such as dressing. In total, 61 million Americans have some form of disability.

Despite the additional challenges in their daily lives, a significant portion of this population can work – and desires to do so. However, many face challenges in their efforts. In 2022, only 21.3% of the population of people with disabilities were employed, according to the US Bureau of Labor Statistics.

Here are some reasons why the employment rate of this population remains low and what employers can do to ensure fairness in the hiring process.

Prejudice

There are multiple reasons why so few people with disabilities are actively part of the workforce. Firstly, this population faces various biases that hinder employers from hiring them.

“There is this prejudice that many of us have, and it’s largely unconscious, that someone who uses a wheelchair cannot perform a job as well as someone who doesn’t use a wheelchair,” argues Jessica Tuman, head of Voya Cares, a program by Voya Financial focused on individuals with disabilities.

In reality, “studies have shown that people with disabilities are actually more loyal,” she says. “They are equally if not more productive, and they have much less turnover in their roles,” she adds.

On average, companies with a workforce including people with disabilities had revenues 28% higher compared to those that did not employ them, according to a 2018 report by the IT and consulting company Accenture.

Misunderstanding of Cost

While considering candidates, employers might assume that employing people with disabilities could be costly.

“Screen reading programs, visual aids, auditory aids, a standing desk,” says Tuman, “all of these things are what we call reasonable accommodations. A misunderstanding is that these accommodations are really expensive, and employers might be discouraged by that.”

In reality, accommodations for people with disabilities typically cost only around $500, according to the Society for Human Resource Management. “Such a cost is not particularly expensive for most employers,” argues Tuman, who adds that many of these employees “actually come to the workplace with their own assistive equipment.”

Corporate Culture

Companies can allocate resources to ensure that their human resources practices are fair and inclusive. Kim Crowdert, a consultant for DEI in the workplace, recommends the use of LinkedIn.

“We have people who openly talk about their disabilities and their impact on their professional lives,” she points out. “Make hires from LinkedIn,” she adds.

Crowdert also emphasizes the importance of fostering a corporate culture that is open and inclusive.

On her part, Tuman suggests that employers seek assistance for the education and integration of individuals with disabilities from organizations like Disability IN and the Job Accommodation Network.

“The truth is, it’s a choice, right?” Crowdert questions regarding companies’ stance on inclusivity of any group. “Are we going to be an organization that creates access for all?” The answer to this question should be affirmative from all employers, she emphasizes.

Source: Oikonomikos Tachydromos (OT)

ADHD & Hyperfocus: The Phenomenon of Extreme Concentration

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Have you ever found yourself so deeply absorbed in what you’re doing that time passes by very quickly? Perhaps it’s playing a musical instrument, reading an exciting book, or learning a new skill.

For individuals who do not have ADHD (Attention-Deficit/Hyperactivity Disorder), this state of flow can be a pleasant or productive way to spend time. However, for those who suffer from ADHD, periods of hyperfocus can be both a blessing and a curse.

Hyperfocus is not an official symptom of ADHD. In fact, it sounds contradictory to what ADHD is more widely known for, which is inattention and lack of focus.

However, ADHD is not really a deficit of attention; it’s more of an abundance of attention. The challenge lies in learning how to regulate and control it.

When this excessive focus is not managed properly, you can experience what is known as hyperfocused ADHD. The good news is that you can learn to recognize hyperfocus and find ways to keep it under control!

At this point, I’d like to demystify many of the experiences that a person with hyperfocus goes through and address some misconceptions or misunderstandings. I want to delve into things like hyperfocus, overstimulation, “selective hearing,” “attention-seeking behaviors,” and emotional dysregulation.

A common characteristic for many neurodivergent individuals is the difficulty of verbally expressing what they are experiencing. They can sit in their own little world, and without the pressure of anyone standing in front of them, they let the words swell from within and flow out from their fingertips onto their laptop. Most, if not all neurodivergent individuals, long to share and have their stories heard.

“Hyperfocus, at least for me, feels almost like a way of being. I don’t feel like I choose my hyperfixations. I feel like they choose me, like a stray cat that shows up one day and decides it’s your pet now. Many of my hyperfixations have taken me by surprise, but one thing I know is that every hyperfixation feels like a Christmas gift from my brain.

Uruguay. Where is that? Oh, they speak an indigenous language more often than a colonial one? Tell me more! You mean mushrooms function like an internet network for trees? I’ll take five books. I just got a tattoo, and now I’m going to buy a tattoo suitcase on my hand and spend hours watching documentaries about the historical and cultural significance of tattoos.

Hyperfocus means I can quickly memorize a list of the 54 regions of Greece because I like the look of maps and I enjoy geography. It means I did really well in math class because there was nothing nice to look at or daydream about, but I excelled in history because the past is full of good stories and questions.

Hyperfocus feeds dopamine. That’s what those of us with ADHD desire. And that’s why every new fixation feels like Christmas. There’s a special kind of magic, almost like a new crush, when I discover a new hobby, and I’m ready to let my mind go on this adventure.”

What is ADHD Hyperfocus?

Hyperfocus occurs when you become fully immersed in something that interests you. This intense focus on a single topic can make you spend more time and energy on it than you intend to. If left unchecked, hyperfocus can lead to negative consequences and disrupt your daily functioning.

Individuals with ADHD are more likely to experience this heightened state of focus more intensely and frequently. In an ADHD hyperfocus state, you may disregard the passage of time and what is happening around you.

When you re-enter reality, you may become disoriented from your surroundings, as if coming out of a “trance.” It may also take some time to regain your orientation and adjust to “real life.”

If you have ADHD, you are more likely to become engrossed in something enjoyable or satisfying. This happens because ADHD changes how your brain perceives reward and satisfaction. Remember that this doesn’t make you a “lazy” or “irresponsible” adult. A brain with ADHD is simply wired to process information, stimulation, and pleasure differently than a brain without ADHD.

ADHD Hyperfixation vs. Hyperfocus

The terms ADHD hyperfixation and hyperfocus are often used interchangeably, but they refer to two different phenomena. ADHD hyperfixation refers to an intense and often prolonged state of concentration on a specific activity or object. This can lead to happiness, satisfaction, and sometimes increased productivity.

However, if not properly managed, a person may invest more time and effort into it than they can afford financially, neglecting their personal needs, duties, and everyday responsibilities. People with ADHD are more likely to experience symptoms of hyperfixation compared to those without ADHD.

On the other hand, ADHD hyperfocus refers to deep focus on a specific task or activity. Anyone can tap into this “flow state,” which is described as being fully dedicated to a task without internal distractions, fatigue, or boredom. Research also shows that this can increase productivity and is often associated with a sense of accomplishment.

While these two phenomena may be somewhat similar, hyperfixation is fueled by intense passion or interest in the activity. In contrast, hyperfocus is guided by tasks and often comes with clear goals and a strong sense of direction.

Controlling and regulating hyperfixation can be challenging. On the other hand, with hyperfocus, you can intentionally induce a “flow state” and adjust it as you wish.

Examples and Signs of Hyperfocus

When uncontrolled hyperfocus in ADHD occurs, a person may have an unhealthy obsession or addiction to a hobby, activity, or object. This is usually associated with the following signs:

  • Losing track of time
  • Disconnecting from the environment
  • Neglecting roles and responsibilities
  • Ignoring personal needs
  • Struggling to stop or change activities
  • Getting caught up in small details

Hyperfocus manifests differently from one person to another. Someone with ADHD may engage in a hobby like knitting or painting, or they might become engrossed in a random activity like cloud watching.

At times, this hyperfocus can be beneficial. Someone fully engrossed in a work-related task or project can dedicate hours to complete it without being distracted.

However, in other cases, it may affect how a person manages their daily tasks and responsibilities. For instance, someone who is deeply engaged in an activity might forget to eat, take a shower, or complete an important assignment.

The overflow of attention associated with ADHD is not necessarily a burden. You can harness this attention towards your current goals when you learn how to direct your focus.

How to Overcome Hyperfocus and Redirect Your Attention

You can overcome ADHD hyperfocus with professional support and proper strategies. Here’s how you can effectively manage your attention and make the most of it:

Set Healthy Boundaries

If you realize that a specific hobby or interest is taking up more and more of your time, try to set clear time boundaries for these activities. Here’s how you can set boundaries effectively:

  • Create a daily or weekly time limit for the activities or hobbies you’re fixated on.
  • Specify a time of day when these activities are allowed. For example, you can schedule them toward the end of the day to ensure you remain focused when working or studying.
  • Define the conditions under which you’ll allow yourself to engage in these activities, such as after exercising or during designated free time.
  • Ask friends and family to help keep you accountable by staying in touch with you.

Schedule Regular Breaks

Incorporate frequent breaks into your activities to prevent excessive immersion in them. Schedule a 5-10 minute break for every 30 minutes you dedicate to your favorite pursuits. During these breaks, you can have a snack, take a quick walk, or do something that helps you shift your focus away from the activity.

Stepping away from what you’re doing can prevent overindulgence in the activity and help you reorient your perception of time and reality.

Explore New Skills and Interests

Diversifying your range of hobbies makes it less likely that you’ll become excessively fixated on a specific activity. Challenge yourself by trying a new sport, learning a foreign language, or picking up a musical instrument. Volunteering is another great way to find enjoyment and fulfillment. When trying something new, it’s a good idea to approach it with healthy boundaries in mind.

Seeking advice and support

Seeking advice and support is crucial when dealing with ADHD hyperfocus. With a stable support system and professional guidance, you can manage your time and resources more effectively. Collaborating with a psychologist can create a safe space for discussing different strategies to help you avoid hyperfocus triggers, set firm boundaries, and prioritize daily activities.

Additionally, your psychologist may recommend Cognitive Behavioral Therapy (CBT) to assist you in managing ADHD hyperfocus and other related symptoms. This form of therapy can enhance motivation and focus while helping you address habits that affect your productivity and progress.

Utilize Tools and Resources

Effective time management is essential when dealing with ADHD hyperfocus. You can use various tools and resources to maximize your productivity, keep yourself focused, and better manage your time.

For example, consider using a time management app to create a daily schedule with time blocks for work and leisure. Additionally, you can try the Pomodoro Technique using a simple timer. This widely used time management method divides activities into intervals separated by short breaks.

A productivity app can help you track your daily responsibilities, ensuring that you complete everything you need to before indulging in leisure activities. ADHD hyperfocus doesn’t have to be the enemy of your productivity. It’s a common experience for individuals with ADHD, especially when engaging in activities they find interesting.

The tendency for hyperfocus doesn’t mean you have to stop doing activities you enjoy. What’s important is to establish the right boundaries, have a support system, and employ strategies to prevent these interests from taking over your life.

Source: Notos Press

The Municipality of Ayia Napa provides specific benefits to persons with disabilities (PWD).

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The Municipality of Ayia Napa will provide specific benefits for people with disabilities (PWD), including tax discounts, free admission to the Sea Museum, and free parking, as announced on Monday by Mayor Christos Zannettou during his speech at the presentation of the project “Accessible Nature and Culture – Sustainable Tourism – In Heritage.”

The Mayor stated that the event “marks the culmination of an almost five-year journey, involving discussions with partners, the preparation of proposals, and their submission.” The collaboration between the Municipality of Ayia Napa and the Municipality of Rethymno, he noted, “is a continuation of a long-standing friendship, as the two municipalities have been twinned since 1996, and we have cooperated on various programs.”

He added that “the project ‘Ayia Napa – Rethymno: Universally Accessible Cities’ was the opportunity for us to get to know each other and collaborate with the National Confederation of Persons with Disabilities, and its contribution to our joint effort was crucial, as it provided the expertise and support for the plans of the three municipalities. Additionally, we worked together with the Municipality of Sotira at the beginning of the project, and today we are preparing to follow a common path within the framework of the Local Government Reform.”

As Mr. Zannettou explained, “the project ‘Accessible Nature and Culture – Sustainable Tourism – In Heritage’ prompted us to rethink and redesign the urban space with new priorities and vision. With the completion of the project, we reach the end of a journey that will serve as a starting point for similar efforts to expand the intervention areas to make Ayia Napa truly universally accessible.”

“We have taken significant steps to expand the infrastructure and provisions of the existing project within the framework of our capabilities and the challenging economic conditions affecting both Greece and Cyprus. The Municipality of Ayia Napa has made accessibility and the social inclusion of persons with disabilities a priority, and our strategic planning includes actions related to the subject, such as the ‘Universally Accessible and Environmental Civic Center’ and the ‘Construction of a Model Autism Center in Ammochostos,'” he continued.

Mr. Zannettou emphasized that “the Municipality’s goal is to attract a diverse tourist group – persons with disabilities – who, until now, have not been targeted because they cannot be accommodated by the existing infrastructure and services. They prefer off-season trips. The overall turnover of this market is over 80 billion euros per year,” he said, adding that “in 2009, arrivals of persons with disabilities at Larnaca Airport reached 50,000. We aspire to further increase this number, with Ayia Napa hosting a significant percentage of visitors with disabilities.”

Referring to the project, Mr. Zannettou stated, “The project has a budget of €1,200,810.00, with the amounts allocated as follows: €354,100.00 for the Municipality of Ayia Napa, €510,800.00 for the Municipality of Rethymno, €80,450.00 for the Municipality of Sotira, and €255,460.00 for the National Confederation of Persons with Disabilities.”

The Municipality of Ayia Napa noted that it “has absorbed 100% of the amount allocated to its projects, and additional resources were used to further improve the proposed actions to achieve a better and enhanced result. However, due to natural and economic constraints, the Municipality is not yet fully and completely accessible, but we are committed to continuing to expand and improve the infrastructure to make Ayia Napa accessible to everyone.”

Christos Zannettou also announced that “the Municipal Council of Ayia Napa has decided to grant specific benefits to persons with disabilities, including tax discounts, free entry to the Sea Museum, and free parking, which will be announced in the coming days.”

The Municipality of Ayia Napa noted that it “has absorbed 100% of the amount allocated to its projects, and additional resources were used to further improve the proposed actions to achieve a better and enhanced result. However, due to natural and economic constraints, the Municipality is not yet fully and completely accessible, but we are committed to continuing to expand and improve the infrastructure to make Ayia Napa accessible to everyone.”

Furthermore, a system for the access of individuals with visual impairments to a beach in the Municipality of Ayia Napa was installed, and improvements were made to the accessibility for individuals with visual and hearing impairments at the Municipal Museum “Thalassa.”

The presentation of the project followed, in which, among other things, accessibility infrastructure was provided at the “Makronissos” beach, including the construction of accessible pathways and the purchase of beach wheelchairs, as well as the construction of accessible restrooms and showers for persons with disabilities. A comprehensive renovation and expansion of the beach’s standard restrooms was also carried out using the same resources. Additionally, accessibility infrastructure was provided at the “Nissi” beach, including designated parking spaces for persons with disabilities and accessible signage.

Furthermore, a system for the access of individuals with visual impairments was installed at a beach in the Municipality of Ayia Napa, and improvements were made to the accessibility for individuals with visual and hearing impairments at the Municipal Museum “Thalassa.”

Source: Reporter

Hopes for halting Duchenne muscular dystrophy

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“Duchenne Muscular Dystrophy (DMD) is a genetic disorder that progressively causes muscle degeneration throughout the body, leading to weakness and increasing disability. It is one of the most common forms of muscular dystrophy, with an annual incidence of 1 in 3,500 births worldwide.

Duchenne Muscular Dystrophy (DMD) primarily affects boys due to its X-linked inheritance pattern. Symptoms usually manifest around the age of 3-5 or even earlier. Girls can be carriers of the mutated gene and typically do not develop the disease, although they may experience muscle weakness and fatigue or cardiomyopathy at a later age.

Managing and treating Duchenne Muscular Dystrophy requires regular and multidisciplinary care from experienced healthcare professionals and support staff with various interventions. When a boy is diagnosed with DMD, it is essential to seek medical advice and perform necessary tests on family members who may be carriers or at risk of developing the condition. Physical therapy, combined with orthopedic aids and wheelchairs, orthopedic interventions when necessary, and symptomatic drug therapy, can reduce complications of the disease and improve functionality and quality of life.

Innovative Therapies

Innovative therapies for Duchenne Muscular Dystrophy have been introduced into clinical practice in recent years, with more in experimental stages or on the verge of clinical trials. Most of these therapies aim to increase the amount of dystrophin in muscles. Due to the large size of the dystrophin gene, it is challenging to deliver it to the body using viral vectors. Therefore, researchers focus on producing a smaller dystrophin, either through the replacement of a mini DMD gene (gene replacement), intervention at the mRNA level to prevent premature protein degradation due to specific premature termination mutations (read-through for premature stop codons), or skipping of incompatible exons resulting from deletions or duplications of DNA (exon skipping) to achieve the production of a smaller dystrophin.

In a significant development, the U.S. Food and Drug Administration (FDA) provisionally approved a new gene therapy for DMD patients aged 4-5 (Elevidys) for the first time in an emergency phase last June. It uses an adeno-associated viral (AAV) vector, which, after intravenous administration, transfers an artificial gene for a micro-dystrophin to muscle cells, where it begins to be produced and takes over some of the dystrophin’s functions inside muscle cells. The ongoing EMBARΚ study in 140 children with DMD has shown preliminary production of micro-dystrophin and an improvement in the clinical picture, particularly in this age group of patients. The expected final results of the Phase 3 clinical trial will help confirm and possibly approve the drug.

In addition to this treatment, other gene therapies for DMD are currently being tested. These include various variants of micro-dystrophin or the transfer of other genes that can stabilize muscle cells. New gene editing technologies, precise interventions for repairing genetic defects (such as gene editing CRISPR/Cas9, Prime editing), are also in development in experimental preclinical models of DMD. All of these advancements hold promise for a better prognosis and more effective treatment of the disease in the near future.

Neuromuscular Diseases Center in Cyprus

In our country, the Neuromuscular Diseases Center – the muscular dystrophy clinic of the Cyprus Institute of Neurology and Genetics (CING) has been at the forefront of diagnosing, treating, and providing multidisciplinary care for DMD patients for the past 30 years. The Center deals with the diagnosis and treatment of conditions such as myopathies and muscular dystrophies, motor neuron disease, myasthenia gravis, and peripheral neuropathies. It is supported by unique specialized laboratories in Cyprus, including electromyography, neurology, neurogenetics, biochemistry, and more. The Center implements new and specialized therapies for both local and international patients based on specific protocols and offers comprehensive care. Moreover, the center feeds into pioneering research programs involving clinical and basic research and provides education to medical and paramedical personnel. The Neuromuscular Diseases Center was accepted as an affiliated member of the European Reference Network for Neuromuscular Diseases (ERN-Neuromuscular), based in Paris, which involves top academic institutions from across Europe.

The Center provides comprehensive care for patients with neuromuscular diseases, including a multidisciplinary team consisting of a pulmonologist, orthopedic specialist, cardiologist, endocrinologist, gastroenterologist, dietitian, and speech therapist. It also offers support through genetic counseling, psychological support, and social services. Special emphasis is placed on physical therapy, with highly trained personnel for individual and group therapy to address mobility problems.

The Center has all the means for a complete diagnosis of neuromuscular diseases. The Electromyography Laboratory offers specialized electrophysiological examinations for identifying and characterizing dysfunction in the neuromuscular system. The Neuropathology Laboratory provides specialized diagnostic services concerning muscle and nerve biopsies for accurate diagnosis of neuromuscular diseases like muscular dystrophy, utilizing a wide range of histological and immunocytochemical techniques to evaluate the molecular structure and various metabolic functions of muscles.

Diagnostic Tests

The Department of Neurogenetics at CING closely collaborates with the Neuromuscular Diseases Center, providing a wide range of genetic diagnostic tests for most of the diseases monitored at the Center. The Department offers genetic DNA testing for patients, studies in families, and the possibility of next-generation sequencing for diagnostic and research purposes. The Biochemical Genetics Department at CING provides specialized laboratory tests on blood and muscle samples for the diagnosis of metabolic and other diseases. Additionally, the Thalassemia Department at CING offers pre-implantation diagnosis services for families with neuromuscular diseases.

Clinical trials for the treatment of Neuromuscular Diseases are conducted at the Center, as well as translational and basic research focusing on the diagnosis and treatment of neuromuscular diseases. Currently, there are four clinical trials underway for new therapeutic drugs for hereditary amyloid polyneuropathy (FAP) and autoimmune myositis.

Dr. Kleopas A. Kleopa is a Senior Neurologist, Director of the Department of Neurosciences, and Coordinator of the Neuromuscular Diseases Center at the Cyprus Institute of Neurology (CING).

Source: Φilenews

How Fires Affect the Eyes – Irritations and Inflammations of the Eyes that Impact Vision.

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Over the past decade, devastating forest fires have struck Australia, Europe, and America, exposing millions of people to their toxic smoke. This has consequences for the human body, with the eyes, which have direct contact with their surface, being one of the first organs affected.

“The smooth function of the eye’s surface (ocular surface) is crucial for vision. However, it is not a single entity but consists of individual structures, each of which can be affected by smoke,” says Dr. Anastasios-I. Kanellopoulos, MD, Ophthalmic Surgeon, founder and Scientific Director of the LaserVision Ophthalmology Institute, Professor of Ophthalmology at the University of New York.

The ocular surface is composed of the corneal epithelium, the conjunctiva, the tear film, the eyelids, and glands that produce various components of the tear film.

The movement of the eyelids stimulates the production of tears, which coat the cornea and conjunctiva. This ensures their adequate hydration, nourishment, and protection from pathogenic microorganisms and toxins.

Anything that disrupts the balance of this system can lead to eye irritation and inflammation that affect vision.

The smoke from forest fires consists of thousands of components, including solids (molecules, heavy metals, organic microorganisms, etc.), vapors, and complex mixtures of gases such as carbon monoxide, sulfur dioxide, nitrogen oxides, ozone, etc. It may also contain volatile compounds, microscopic suspended particles, and more. Additionally, because forests are often near buildings, businesses, or infrastructure that may burn, smoke from forest fires can contain many other chemicals and toxic compounds.

Exposure of the ocular surface to all these components can cause symptoms in both the personnel trying to extinguish the fires and the general population. Moreover, it’s not just the residents of affected areas who are at risk, but people hundreds of kilometers away, as smoke from forest fires can cover vast distances, driven by strong winds.

“Many people experience eye irritation and inflammation from wildfires. This is even more likely to occur in those who already have eye disorders such as dry eye, blepharitis, or allergic conjunctivitis,” notes Dr. Kanellopoulos. “Irritation and inflammation from smoke can cause a burning sensation, stinging in the eyes, redness, and increased tear production (tearing). Patients may also feel a foreign body sensation in their eyes, dryness, and grittiness.”

Especially in areas with heavy smoke, some patients may experience changes in their vision (e.g., blurriness), irritation of the conjunctiva, or, more rarely, severe dry eye that damages the corneal surface and affects visual acuity.

Furthermore, with prolonged exposure to smoke from forest fires, intense inflammation of the conjunctiva can occur, promoting the formation of scars. These scars can lead to a condition called trichiasis, where eyelashes grow inwards (towards the eyeball), constantly touching and irritating the conjunctiva or cornea.

When smoke from fires has a high concentration of microscopic suspended particles, it can reduce vision by causing severe eye irritation. These particles can also trigger allergic reactions.

Smoke from wildfires can cause significant discomfort for contact lens wearers, as it can get trapped between the lenses and the eyes, causing inflammation and pain.

“Fortunately, the effects of smoke from forest fires on the eyes appear to be temporary. However, we do not know if the repeated exposure to smoke, which we have been experiencing in recent years, will have long-term consequences,” emphasizes the professor. “We know that those living in areas with high levels of atmospheric pollution have a significantly increased likelihood of developing dry eye and long-term serious conditions such as glaucoma and age-related macular degeneration. However, this data comes from studies on atmospheric pollution from sources such as the combustion of fossil fuels and industrial processes. Special research is needed to determine if and what kind of long-term consequences the exposure of the eyes to airborne toxic pollutants from forest fires may have.”

This does not mean that we are defenseless against potential risks. To protect ourselves when there is smoke from a forest fire in the atmosphere, the first thing we should do is enter an indoor space with closed doors and windows. If you have air conditioning with HEPA air filters, you can use it to refresh the indoor air without the smoke particles.

If you have pre-existing ocular surface conditions (e.g., dry eye, conjunctivitis), do not go outside at all. To protect and relieve your eyes, use artificial tears. Patients with eye conditions who are already using them may need to increase their application (up to twice the usual amount) until the atmosphere is clear of smoke.

If it’s necessary to go outdoors, wear glasses that cover your face well to reduce the airflow entering your eyes.

Finally, if you wear contact lenses, “make sure you strictly adhere to hygiene and replacement rules. However, if the fires continue, you may need to wear your corrective glasses for a while,” concludes Dr. Kanellopoulos.

Source: e-farmako.gr

The intervention of the Multiple Sclerosis Association and OSAC on the issue of Despina Rousou.

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The Pan-Cypriot Multiple Sclerosis Association, in its statement, “condemns the removal of the journalist from the Cyprus Broadcasting Corporation, Despina Rousou,” from her duties, “a decision that was taken arbitrarily and without respect and dignity.”

The Pan-Cypriot Multiple Sclerosis Association also expresses “strong dissatisfaction and protest against the heartless and unjust treatment of a person with a disability and calls for the immediate intervention and support of the relevant authorities regarding this poor treatment,” as stated, by the Cyprus Broadcasting Corporation (RIK).

The Pan-Cypriot Multiple Sclerosis Association hopes for “the elimination of discrimination against people with disabilities.”

It also states that “unfortunately, there are still individuals and services that infringe upon the rights of persons with disabilities, who, despite their health problems, continue to struggle and advocate for their right to work.”

“Instead of being rewarded for their resilience, they are being degraded in this way,” concludes the Pan-Cypriot Multiple Sclerosis Association.

The letter from the Pan-Cypriot Multiple Sclerosis Association regarding Despina Rousou:

“On behalf of the Federation of Cyprus Patient Associations (OSAK), we express our strong protest and indignation at the unacceptable behavior and undignified treatment that Mrs. Despina Rousou has experienced.

Mrs. Rousou is a person with chronic illness and disabilities, who has been employed at RIK for many years, a member of the Executive Committee of OSAK, and has been an active volunteer with significant contributions to the patient movement for many years.

Despite facing multiple health problems and disabilities, Mrs. Rousou has been working with unparalleled integrity and dedication in her duties for several decades (please note that according to our information, she has one of the lowest sick leave records at RIK), without ever invoking her illness or disability to seek any favorable treatment.

Mrs. Rousou serves as a shining example to all of us and should receive the support and encouragement of the management of the Foundation to enable her to work and perform her duties, rather than being subjected to the “disrespectful and degrading behavior” as noted in the report by the Commissioner for Administration, Mrs. Maria Stylianou Lottides.

Unfortunately, the consequences for her health resulting from the above are serious, and due to the exacerbation of her illness, she is unable to work and is hospitalized.

The unfavorable treatment she received from the management of RIK and the unacceptable practices are condemnable, and for this reason, we urge you to take immediate action and restore order and respect for the rights of Ms. Rousou.

We call on the President of the Board of Directors of RIK to restore order and respect for human rights, both for Ms. Rousou and for all employees in general at the state channel, which should promote respect for human rights through the decisions of its management and serve as an example to be followed in our country.”

Source: Φilenews

Inclusion Program for Children with Hearing Loss in Middle and Technical Education

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Subject: Integration Program for Children with Hearing Loss in Secondary and Technical Education

The education of children with hearing loss in general education has been legally safeguarded through the enactment and implementation of Law 113(I)/99 “On the Education and Training of Children with Special Needs of 1999,’ as well as the accompanying regulations.”

The inclusion of these children in General Secondary and Technical and Vocational Education and Training is working very successfully. This is evident from their entry into Higher Education Institutions in Cyprus and elsewhere. To continue and enhance the effective education of children with hearing loss, the following should be considered:

1. Staff Training

Every school year, seminars are held with the aim of training educators involved in the inclusion program for children with hearing loss. Please ensure that all relevant individuals attend these seminars. Additionally, short seminars or sample lessons may be organized at schools in consultation with the Coordinator/Link Worker for Hearing Impairment.

2. Implementation of Individual Educational Plans (IEPs)

With the start of the school year, the school is obliged to implement the Individual Program of each child, as approved by the District Committee for Special Education and Training (EEAEAT) (accommodations, support hours, exemptions, and withdrawal from classes). It has been observed that in some schools, the start of support is delayed. The support program must be implemented from the first day of the school’s operation and should be included in the temporary school schedule. The responsibility for ensuring the adherence and implementation of the Individual Program lies with the school’s Assistant Director in charge of Special Education.

3. Exemptions or Withdrawal from Classes

To fulfill support hours, children are exempted from and withdrawn from specific classes as specified in their Individual Program, which is sent out in the early days of the school year after approval by the EEAEAT. In cases where the IEP is not functioning as approved, the Coordinator/Link Worker for Hearing Impairment should be informed.

4. Educators

The role of the educator is particularly crucial for the smooth psychological, academic, and social development of children with hearing loss. Therefore, educators should be willing to engage, be sensitive, and be informed about or have attended seminars related to the education of children with hearing loss. Additionally, their physical characteristics should contribute to better communication with the student (e.g., natural speech rate, clear articulation). Educators who take on the above responsibility should be aware that anything assigned to them becomes obligatory, such as following specific guidelines (e.g., simplifying the curriculum language, instructional adaptations, writing semester reports). Support lessons should be conducted by the teachers of the department, as this contributes to better preparation of the child and the development of better relationships between them.

5. Number of Children in the Class with Children with Hearing Loss

The number of students in the class where a child with hearing loss is enrolled should be significantly smaller than in other classes of the same grade (Article 12, 2 (d) (ii) of the Law on the Education and Training of Children with Special Needs of 1999), as it serves important educational purposes. It is advisable to avoid placing children with behavioral problems or ADHD in the same class.

6. Examination Accommodations (Tests and Final Examinations)

Children with hearing loss are entitled to examination accommodations, both in tests and final examinations (e.g., additional time, simplified language in test questions, bearing in mind that this does not dictate the answer, exemption from the listening part in foreign languages). The accommodations for each child are specified in the decision of the District Committee for Special Education and Training (EEAEAT) sent to the school.

7. Technical Infrastructure

One of the fundamental requirements for the successful inclusion of children with hearing loss is the provision of an environment free from noise and disruptive sounds. Therefore, the classroom and the individual support room should be located away from sources of noise (e.g., sports fields, cafeteria, music room), soundproofed (e.g., with a plastic floor, heavy curtains), and adequately equipped (e.g., interactive whiteboard, projector).

8. Adaptation of the Curriculum

Children with hearing loss require adaptations to the curriculum to meet their specific educational needs. This includes more instructional adjustments from educators for better communication, identifying key points for exams, linguistic adaptation of the curriculum in support lessons, and so on.

Source: Παιδεία news