HIV, CF, CMT, and HD in CR

The presence of organizations in the Czech Republic that cares for its citizens with human immunodeficiency virus (HIV), cystic fibrosis (CF), Charcot-Marie-Tooth (CMT), and Huntington’s Disease (HD) could only mean that the mentioned diseases are prevalent there and, therefore, should be controlled.

The human immunodeficiency virus (HIV) is a virus that attacks the immune system. Without it, our bodies would have trouble fighting off diseases. It could lead to dementia, anxiety and depression, and seizure, among others.

As such, the Bill and Melinda Gates foundation donated $140 million dollars to search for its cure. It would be similar to a pump in the form of an implant.

Cystic fibrosis (CF) is an inherited disorder that can damage the cells in the body that produce mucus, sweat and digestive juices. It can affect the respiratory system, gastrointestinal system, musculoskeletal system, genitourinary system, and the reproductive system. The disease is caused by a defect in a single gene, which scientists refer to as CFTR.

Recently, though, researchers at the Case Western Reserve University have found a way to replace the gene that causes CF with a new imaging technique.

It is called the tri-modal imaging device that consists of an x-ray, the first modality that can tell about the structure; and the gamma emission and the optical, the other two modalities that can both give information function.

Charcot-Marie-Tooth (CMT) is caused by mutations in genes that produce proteins involved in the structure and function of either the peripheral nerve axon or the myelin sheath. Once it degenerates, the motor nerves could result in muscle weakness and atrophy in the extremities (arms, legs, hands, or feet) while the sensory nerves could bring about a reduced ability to feel heat, cold, and pain.

Last October 24, 2016, though, scientists at the Washington University School of Medicine in St. Louis and Stanford University reported that they have designed small compounds with a potential to correct the mitochondrial dysfunction in CMT. “This mitochondrial protein has never been targeted before,” the senior author Gerald W. Dorn II, MD, the Philip and Sima K. Needleman Professor of Medicine was quoted saying in a report.

A progressive brain disorder, Huntington’s Disease causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition). It usually happens in a person’s thirties or forties (adult-onset Huntington disease) or during childhood or adolescence (juvenile Huntington’s disease) and affects an individual’s walking, speaking, and swallowing.

Fortunately, an electric wheelchair was invented by Dr. Yodchanan Wongsawat from the Center for Biomedical and Robotics Technology Faculty of Engineering at Mahidol University in Thailand. It has an automated navigation system that can adapt on whether the hands of the user are still functional. If it is, a patient could use their hands. If it is not, the modes can be operated by one’s chin or eye.

The wheelchair can also detect obstacles on the floor with its Rotating Laser Scanner, map location with its Laser Scanner, describe commands with its 7’’ LCD screen, and acquire data with its Mini-PC.

Another device, the Eye Gaze System, can generate speech by simply looking at control keys or cells displayed on a screen. It could empower people with Huntington’s disease—particularly those in later stage—since they usually have poor muscle coordination, mental decline, and behavioral symptoms.

“Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as the physical limitations that flow from actual impairment.” ~William J. Brennan, Jr.

Video taken from the YouTube Channel of the AP Archive

Help in Czech Republic

Established in 2000, the Czech National Disability Council (CNDC) has aimed to advocate, promote and meet the rights, interests, and needs of disabled people in the country, regardless of the type or extent of their impairment. It has collaborated with the state administration and local government at all levels as well as with organizations and institutions working in this field at both the national and regional level.

It is the advisory body of the Governmental Board for People with Disabilities. It is a member of the governing board of the national development programme Mobility for All. It is a member as well of the joint committee for the Programme of Development and Renovation of Public Transport Vehicles, and the two Boards of the Association of Cities and Municipalities.

Aside from those, the CNDC collaborates actively, too, with the Association of Regions of the Czech Republic, the Association of Employers of Disabled People in Czech Republic, and the Trade Union of Employees in Health and Social Service in the Czech Republic.

Comprising it are member organizations, among of which is the ARCUS Cancer Centre that was founded in 1993. It has helped cancer patients and their families since then under the chairmanship of John Koželská, winner of the Olga Havel signatory of the Paris Charter against Cancer.

There are also organizations specifically designed to cater Czechs with human immunodeficiency virus (HIV), cystic fibrosis, Charcot-Marie-Tooth, Huntington Disease, chronic diseases, and deafness.

The Czech AIDS Help Society was established in 1989 as a self-support initiative of PLWHIV [people living with HIV]. Through finances from grants, donations, and fees in its own activities, the Czech AIDS Help Society continues to promote HIV prevention and awareness through anonymous and free-of-charge HIV testing; shelter accommodation services to PLWHIV in its own social center, the Dum Svetla (Lighthouse); on-site HIV/AIDS counseling service in Prague and Ostrava; a national toll-free HIV/AIDS hotline; legal assistance to PLWHIV that were discriminated against; and anti-stigmatization campaigns.

The Czech Cystic Fibrosis Organization was founded in 1992 by the parents of the children who has it. Originally, it was called the Club of Parents and Friends of Children Cystic Fibrosis. The parents pass on practical experiences to each other; in early days, the club voluntarily works for several mothers of sick children. It still involved in “active” parents till this day to handle the provision of the patients, and, together with the staff, promote cooperation among the center; inform the public about cystic fibrosis; protect the legitimate interests of the patients; secure funding for the activities of the club; subsidize the necessary equipment;  and support families of CF patients with low incomes financially.

Society CMT, on the other hand, is an association founded in June 1999. Its objective is to defend, promote, and fulfill the interests and needs of those sickened with Charcot – Marie – Tooth, a neurological disorder that affect the nerves outside the brain and spinal cord, in coordination with state and local governments.

Widowed by the American folk singer Woody Guthrie who suffered from Huntington’s Disease, Marjorie founded an association for those with the rare inherited disease as well. It—the Czech Huntington Association—started to set up a self-help organization in May 14, 1991 to “map” the cause of an illness in Bohemia and Moravia characterized by progressive dementia, abnormal posture, and involuntary movements.

To prevent the “diseases of civilization” (e.g. cardiovascular disease, diabetes, asthma, allergy, oncological diseases, epilepsy, multiple sclerosis, severe renal and metabolic diseases, osteoporosis, vertebral diseases, etc.), the Union of Persons Affected by Chronic Diseases in the CR spread its network of 330 organizations in 290 towns and villages in the Czech Republic with its 55,000 members.

Those with hearing impairment, meanwhile, can go to the Czech-Moravian Unity of the Deaf. It was founded in Brno in 1998 and operates in Olomouc, Breclav, Jihlava, Pilsen, and Prague, aside from there. Its aim: unite the other associations for the hearing-impaired in the region to “effectively promote their mutual cooperation.”

This is not to say that Czechs with mental disability are neglected in the country. They are, in fact, encourage to “expand their opportunities in various fields of life” by the Society for Integration of Mentally Disabled Persons (DUHA); “live independently” by the Inclusion Czech Republic; and “take responsibility for their decisions” by the Pohoda (Comfort).

The Association for Complex Care of People with Cerebral Palsy would inform the public everything that has to be learned about the disease. The DEMKA Club would work with the families of PWDs in reacquainting themselves with the rest of the society.

The Czech Paraplegics Association (CZEPA) would protect the rights and interests of people afflicted with spinal cord injury (SCI). The Union for Rehabilitation of Persons with Cerebral Vascular Accidents would look after Czechs sickened with stroke.

Other organizations for PWDs in the country are the Association of Physically Handicapped in the Czech Republic, Association of  Persons with Disabilities and Their Friends, Helping Hand, Home For Me, Assistence O.P.S., Association of Parents and Friends of Handicapped children in the Czech Republic, and Czech Abilympijská Association.

“The only disability in life is a bad attitude.” ~ Scott Hamilton

Video taken from the YouTube Channel of Flux Us

Czech athletes

Able to put the Czech Republic in the sports’ map are four of its citizens with disabilities.

Jiří Ježek has lost his right leg in a car accident nine years before he turned to competitive cycling as a hobby. Since then, he has bagged gold medals after another—in the 2000 Sydney Paralympic Games, in the 2004 Athens Paralympic Games, in the 2008 Beijing Paralympic Games, and in the 2012 London Paralympic Games. He has competed against non-disabled riders—the most notable of which was during the Král Šumavy, a 250-kilometer track1—and has claimed the UCI Paralympic World Champion in 2006, 2007, 2009, 2010, and 2011.

Motivated by Joseph Lachman2, Jiří Ježek has written the book “Frajer” (“Ace”) in 2008 “to give hope not only to the similarly disabled people on the grounds of his life story.” He has founded the Czech hockey team of the disabled, supported the AMSA Czech HendiGolf, and backed other charities that help disadvantaged children and promote healthy-living.

Martin Kovář is a swimmer impaired because of a spinal cord injury. He has brought home three gold medals during the 2004 Athens Paralympic Games and created three world records. He used to be the adviser of former Prime Minister Vladimír Špidla, and with this experience, Martin Kovář has engaged himself actively in the Paralympic movement.

Běla Hlaváčková is another Czech Paralympic swimmer. But she is not just any other swimmer. She is the winner of five gold medals in the 50m freestyle during the 2004 Athens Paralympic Games and the 2008 Beijing Paralympic Games.

Petra Kurková is the best deaf sportswoman in the world. She has won a gold medal for the supercombination at the Deaflympics in Salt Lake City in 2007; brought home two golds, one silver and one bronze medals from Swedish Sundsvall; and won four gold medals at the Olympic Games in Davos in 1999.

“Somebody will always try to find some shortcut to victory. But I believe that those cheaters are not happy inside, they must live with the lie.” ~ Jiří Ježek

1Jiří Ježek won second place then—within just a second between him and the winner!

2Impaired, Joseph Lachman was the silver medalist during the 1988 Seoul Paralympic Games.

Video taken from the YouTube Channel of Akis Van Doorn

Czech Republic

How disability has been defined and understood in the Czech Republic is described in political, social and cultural context. The state of its law and disability policy has not yet been completed even after 27 years that it has been in transition from communism to democracy.

As such, there is no coherent definition of disability and/or “persons with disabilities” there. People with disabilities are referred to as “persons with changed labor ability” in employment law (No. 435/2004), “invalids” in social policy (No. 100/1988, amended in 2004 to “people with health disadvantages”), “people with health impairments” in health policy (No. 47/1997), “people with partial/full invalidity pension” (No. 155/1995) or “children with special needs” in education policy (No. 561/2004), and “people who due to their invalidity cannot perform gainful employment” (Medical Advisory Committee, 2003).

There is also a difference between the number of people who self-identify as having a disability, the number of people who qualify as disabled for the purpose of various benefits and compensations, and the number of people who are classified as fitting into one of three categories of disability (severely disabled, very severely disabled and very severely disabled with a companion). Many Czechs who have medical problems would rather refer to themselves as “ill” only since disability is a stigma in contemporary Czech society.

Disability issues would only be a part of existing statutes on employment, education, health care, housing, accessibility, and social welfare or rehabilitation there. They would be “generally mentioned” as a consequence of a social welfare model implemented in the past and still pervasive in the present.

The Government Board for People with Disabilities, for one, was established in 1991 through the resolution of the public administration authorities in the government and non-government sector. The Employment Act No. 1 of 19911 mentions disability as a protected category, defines sheltered workshops and qualifies employers eligible for governmental support.

Integrating children with disabilities at regular schools whenever possible is the aim of Education Act No. 29 of 19842. Providing social services and rehabilitation, on the other hand, are Social Services Act No. 100 of 1988 and Social Needs Act No. 482 of 1991.

The Social Benefits Act No. 117 of 1995 gives benefits including housing, transportation, rehabilitation aids, and unemployment. The Health Insurance Act No. 47 of 19973 guarantees free healthcare—including some technical and medical equipment—to PWDs, while the Building and Planning Act No. 50 of 19764 guarantees accessibility of environment.

We, the ones who are challenged, need to be heard. To be seen not as a disability, but as a person who has and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.” Robert M. Hensel

1 Amended as No. 435 of 2004

2 Amended as No. 561 of 2004

3Amended as No. 285 0f 2002

4Amended as No.83 of 1998

On Inclusivity

The thought of people–with disabilities or none–learning together excites The PWD Forum more than ever!

The idea, which was initiated by The Teacher’s Gallery, would be discussed in a conference next year. Its another purpose is to bring together teachers, education administrators, advocates, businesses and politicians for the first time for this purpose.

“We are people like them and that with the right support, we are capable of learning and bettering ourselves and contributing to society just like persons without disabilities,” shared Benjamin Almeda-Lopez, special project officer of The Teacher’s Gallery, in an email.

For all those good intentions, however, The PWD Forum still would rather wait if inclusive education would result in a just society for PWDs and non-PWDs alike.

“There are many benefits to inclusion of students with disabilities in ‘normal’ schools,” Almeda-Lopez added. “For one, the students without disabilities are able to interact with PWDs on a daily basis.”

This interaction, if successful, can help PWDs—particularly the children—develop greater belief in themselves, Almeda-Lopez further argued. Every Filipino would have the same opportunities, too, preventing “alienating and disadvantaging PWD students socially, academically and emotionally.”

But this would just give “normal” people a reason to feel that they’re better that their counterparts. Worse, the former may also think that they are just handing favors to PWDs that are in their school.

The PWD Forum is pushing for the integration of special education in the basic and secondary curriculum in the country. It has reiterated that after The PWD Forum turned one in the blogosphere and even after it turned two. The PWD Forum has also made a case on the necessity, benefit, and practicality of sign language if only it is taught to every one.

“We have a responsibility to ensure that every individual has the opportunity to receive a high-quality education, from prekindergarten to elementary and secondary, to special education, to technical and higher education and beyond.” ~ Jim Jeffords

Video taken from the YouTube Channel of teach.org

Opening, Minds, Opening Hearts

With the end-goal of promoting inclusive education in the Philippines, The Teacher’s Gallery is going to hold a summit—the first of its kind—that would empower teachers’ role in nation building.

“There are two main purposes for the summit. The first is to promote awareness for inclusive education in the Philippines, primarily for PWDs so that people are aware that we are people like them and that with the right support we are capable of learning and bettering ourselves and contributing to society just like persons without disabilities. This is part of our theme, I Am You,” shared Benjamin Almeda-Lopez, special projects officer of The Teacher’s Gallery, in an email.

“The second is to form a community out of teachers, education administrators, advocates, businesses and politicians by bringing many of them together for the first time at our event. We hope that by uniting all of these groups at our summit, we can form many new working partnerships between them beyond the three days of our conference,” he added.

The Teacher’s Gallery aims to “address the current challenges confronting the educational system in the Philippines.” It is advocating interaction between students with disabilities and to those without in “normal” schools.

“For one, the students without disabilities are able to interact with PWDs on a daily basis. This lets students without disabilities become familiar with their PWD peers and hopefully helps them become more accepting, tolerant and understanding as a result. Interacting successfully with students without disabilities can also help PWD children develop greater belief in themselves.”

“From an academic standpoint, inclusive education can prevent cases that still occur  where ‘separate but equal’ facilities for PWD students are actually below what is required to meet the needs of PWD students. It ensures that all children of the Philippines have the same opportunities to succeed and prevents alienating and disadvantaging PWD students socially, academically and emotionally provided both teachers and fellow students are willing to accommodate them.”

“The biggest change in the education of children starts through transforming the lives of teachers. Teachers have the power to positively change the lives of children. Every student’s success in learning is a step to contributing towards a better future for all.” ~ The Teacher’s Gallery

Video taken from the YouTube Channel of W-Dare as suggested by Benjamin Almeda-Lopez

Chronic Illnesses in Netherlands

In 2002, chronic diseases accounted for 88% of all deaths in the Netherlands.

Back then, overweight and obesity has been the culprit. It was even projected that the prevalence of these health conditions would increase in both men and women over the next 10 years.

But overweight and obesity continued to “soar” in the Netherlands; one in 10 people in the country suffered from the aforementioned diseases in 2012. Type 2 Diabetes1, high blood pressure2, degenerative joint disease, and cardiovascular disease3 were still developed; and anxiety, depression and poor mental health grew more common.

Through advances in technology, however, chronic diseases in the Netherlands could now be controlled. Diabetes could be kept in check through various smartphone applications such as the BG Monitor Diabetes, which can keep a photo log of meals; Diabetes in Check, which can scan barcodes on packaged foods to immediately get their nutrition information; and Diabetic Connect, which make connectivity to the larger diabetes community possible.

Speaking of connectivity, mySugr Diabetes Logbook can track meals necessary for HbA1c reading. Insulin dosages and blood sugar measurements could also be logged in Glucose Buddy and OnTrack Diabetes. Children with this chronic illness could benefit, too, from the “simple and intuitive” interface of the BlueLoop as well as with the games and fun illustrations of Carb Counting with Lenny.

High blood pressure, on the other hand, could be regulated by the sound therapy HIRREMTM (high resolution, relational, resonance-based electroencephalic mirroring) using audible tones to reflect the brain’s pattern of electrical frequencies. Also labeled Brainwave OptimizationTM, the non-invasive neurotechnology can correct neural imbalances of the hemispheres in the brain.

Degenerative joint disease cannot be cured; the pain can only be eased and the swelling reduced. Joints with end-stage disease, however, can be remedied with either arthrodesis (fusion of the joint) or prosthetic joint replacement. UW-Madison researchers have also though of inhibiting the activity of cathepsin K and cathepsin S (TRAP) to nurse the disease somehow.

Incidences of cardiovascular disease can also be lessened with CADence™. It is quick, noninvasive, no-needle, and a zero-radiation test to “look” for Coronary Artery Disease (CAD) risk factors in patients by the sound of blood flow in the coronary arteries.

Anxiety could already be confronted with virtual reality nowadays, too. Depression could be treated with Deep TMS [Deep Transcranial Magnetic Stimulation]4 and poor mental health could be improved with telemental health services.

“It’s the repetition of affirmations that leads to belief. And once that belief becomes a deep conviction, things begin to happen.” -Muhammad Ali

 

Video taken from the YouTube Channel of EU CHRODIS

1Type 2 diabetes causes cells to change, making them resistant to the hormone insulin. Blood sugar cannot be taken up by the cells then, resulting in high blood sugar and for the cells to gradually fail.

2Having a large body size increases blood pressure. Excess fat may also damage the body’s kidneys.

3Excess weight may cause the heart to “work harder” to be able to send blood to all the cells in the body.

4Not unlike the technology in a magnetic resonance imaging, TMS works through a mounted helmet that generates an electrical pulse, too. But the patients cycle through two-second pulses followed by 20 seconds of rest for each sequence—called a “Train”—in this method, and is repeated for about 20 minutes. It should be done daily for about six weeks, followed by a three week tapering off period.