Awareness vital for DMD family

Anil K Upadhyay

Duchenne Muscular Dystrophy (DMD) is one of more than 20 types of Muscular Dystrophies (MD). It is the most common genetic killer, crossing all over the world, estimated to affect one in 3500 boy’s worldwide. All the MD’s are caused by faulty gene (the units of inheritance that parents pass to their children), which cause progressive muscle weakness due to muscle cell break down. In DMD case, mostly boys after 15, the cause of infection within the respiratory and cardiac system can lead to death.

The Duchenne gene is the largest gene identified till date. Unfortunately, no cure has yet been discovered in all muscular dystrophies. Much can be done to help limit the effects of the MD but no treatment is known which affects the actual loss of muscle cells. Intensive research to find a cure has been carried on for many decades in many centers around the world. DMD is caused by an X-link gene (i.e.; the gene is on the X-chromosome, girls have two of these and boys have only one). Such women are known as carriers. Each subsequent son of a carrier has a 50:50 chance of being affected and each daughter has a 50:50 chance of being a carrier herself.

Therefore, DMD diagnosis will inevitably affect everyone who is close to the child: parents, grandparents, extended family members, neighbours, and friends. Anger, shock and sadness is the prevailing feelings. Sometimes parents blame themselves for passing mutated gene that cause Duchenne. One parent may blame others, some blame this happened because of you. To find out or diagnose DMD, it takes time according to place to place and doctor to doctor. Due to these reasons, they sell their assets for hit and trail treatments. Often people blame God also. Oh God! What is this, why for me? What is my fault? What to do? Who will help/guide us?

There is fear and anxiety with each parent in this case. Will I make it to the bathroom on time? What if he falls? Who will help me? What if there are any accidents or incidents? Who will get him out of the house? If I have no money than who will help me? Who will guide us/support my son? Many questions occur in the mind of these DMD disorder families. Many times parents feel they are taking two steps forward and one-step backward. So, it is important to develop new strengths and insights in their selves, and feel that ‘You found a new whole world because of your child’s deadly disease, and you also feel that you are a better person because of it’. So, it is the best way to do better work for these disable children or human beings.

The most important thing to remember in this situation is to make a plan and develop strong support systems within the family members, friends, helping organisation, and other parents of the child with or without MD. Parents or family must know about the disease. What is this disease? What causes it? What are the symptoms, and which is the best treatments? What is our role? Who will help or guide us further? These are the main problems in this situation. All these requirements must be considered and evaluated before it is possible to make prediction on how long it will take for a safe and effective therapy to be available for children with DMD. The answer to this question is important for parents and their sons. It will probably take several years, or may be more, until DMD is conquered.

This is not what has been hoped for, that is negative side of this difficult problem, the positive is that there are more capable and dedicated researchers in laboratories all over the world working on a cure, it is certain that an effective therapy will develop, sooner or later. Let us hope for the better!. For this reason, everybody needs one package support system forever. This is only possible, if it is managed properly in one platform i.e: improve standards of care, and share the information with those who need it most. But it is not possible to get all information, guidelines, and support system on this.

So, awareness is the main vital part of this work. This is only possible through media network. It helps and coordinates people to people, parents to parents, patients and parents to professionals and caregivers, patients to patients, and patients, parents, institutions to supporters. If there is awareness, there is a possibility to raise funds, if there is funds there is research, if there is research there is best care and if there is best care, everybody must raise their hopes.

Therefore, there is a need for a voice to be raised on DMD, so that something can be done to combat this deadly disease. This is the best time for each and every individual and institutions to support and also mention this deadly disease in the national health agenda for the future benefit of our DMD boys.

Journey of mobile communication

Sudan Jha

In yester-years, pigeons were used as trusty means for sending and receiving messages. Today the scenario has radically changed as mobile communication has transformed the world into a small "global village".

Mobile communication has been continuously undergoing technological developments for the last few decades. In the eighties, the technology of 2G marked the age of successful mobile communication. However, the concept of 2G technologies was modified and conceptualised and renamed as new technologies like 2.5G and 3G. Moreover, 2.5G and 3G were the successes of 2G technologies and were concentrated additionally on data services. Now, scientists are working on 4G technology.

Bell Laboratories was the first to introduce the concept of cellular communication in USA in the late 1960s. Later on, in the mid 1970s, AT&T’s Bell Labs demonstrated CMRT (cellular mobile radiotelephony). But due to the lack of necessary technology and proper infrastructure, the commercial service could not start. The first operational cellular system was opened in the Nordic countries-Sweden, Denmark, Norway and Finland in the early 1980s. Less than two years later cellular service were launched in the United States, using AMPS (adv. mobile phone service) technology.

In Nepal, the Nepal Telecommunications Corporation (NTC) is the major organisation which provides telecommunication services throughout the country. NTC has already introduced the GSM Cellular Mobile services. Besides these, GSM Cellular Mobile Service in four main cities, Internet Gateway Access, payphone Services have been also introduced by NTC. However, the organisation has borrowed all the devices and hardware enabled services from foreign electronic industries like Nortel and Telerad. Though many technical ventures and programmes have been launched, most people are unaware of these techno-improvements.

Moreover, now communication has moved from analog to digital to mobile. One survey shows that the growth of mobile communication has been the most explosive and has moved from zero to 270 million users, which is about one ninth of the total wired telephone lines. The number is growing at five percent. Although, such technology might be newer to the environment like ours, but being portable, easy handling, technically trouble free and providing better services and that too without any errors like (cross talk as in cordless, low data rate, etc), these technology can boom up in our market.

However, the high costs of incoming and outgoing calls for users of mobile phones have many complaining that the prices should be reduced, which is true. An example can be taken from the Reliance (Indian Company) which has facilitated its mobile users for free SMS, free incoming calls, and many other services along with the Internet. However,
we don’t have the market as compared
to India.

In the present context, GSM based cellular mobile services gives more advantages over cordless sets. It provides more reliable means of voice as well as data up to 9.6 KBPS communication with total mobility. It works through the Subscribers’ Identification Mobile (SIM) card which includes a programmable microchip, designed for GSM as a security measure based on the smart card technology. Telecommunication has come a long way in Nepal and the newer services such as GSM cellular mobile services can add another chapter to the development of telecommunications. The success or failure of such technologies entirely depend upon the performance and the reliability of the system, the people and moreover the government’s strategy. Privatisation will invoke healthy competition among the private companies to provide better services.

Constraints: Nowadays the hardware products are so light-weighted that most of them are transportable by airplanes, while the software products are weightless and can be transportable over satellite and other telecom links. For example, the Meiken Digital Technology office in Kathmandu, which receives the original data on gas and water pipes deployed in various cities in Japan, produces digital maps of the cities containing information as to where the pipes are actually being laid, and sends the map data back to Japan via a satellite link. This is a very good example of what ICT can do to countries such as Nepal which is located at a great distance away from where customers are located and without a seaport.

On the other hand, the international standardisation of ICT has defined interconnection interfaces of hardware and software component products, such that one company or one country can concentrate their efforts on a specific focused area, such as semi-conductor components or software packages dealing with, for example, the handling of digital maps. These two factors, enable many regions of the world to be engaged in the production of specific products, thus functioning as an essential node of a global work sharing network.

Where the plates collide

SWETA PANT

"Human" stands proud about achieving and exploring things and places never imagined. The desire of reaching the moon, space odyssey, cloning, supercomputers, transgenic plants, building block of matter (particle physics), nanotechnology, etc that was once distant dreams for many people have now become a part of reality. However, although man has been able to explore things once never imagined they have not yet been able to conquer the one vital thing that affects them everyday ‘Mother Nature’. Predicting Mother Nature is not an easy job. You never know when she will strike, where she will strike and how much damage she will cause.

Imagine this - when you are relaxing on your sofa and watching television, you feel a little bit dizzy. You start thinking about what is happening to you. Then all of a sudden, the light bulb in the room starts to move back and forth, the picture on the wall in front of you shakes from side to side and the door of the room slowly squeaks open. The first thing that comes to your mind is that maybe it is a ghost. You hear your family telling you to get out of the house and go to the lawn as fast as you can. You reach the lawn and feel the earth shaking under you. You realise you have just experienced an earthquake.

So, what is an earthquake? Just the shaking of the ground and destruction or is there more? Well, most people who are unaware of what earthquakes are tend to define an earthquake as a disastrous event that causes nothing but destruction. This is true to some extent but if it were not for earthquakes, the map of Nepal would be very different today. The Himalayan range that we are proud of today is a formation made from earthquakes. They are formed resulting from intracontinental collision of the Indian Plate with the Eurasian Plate. The Indian Subcontinent drifts northward beneath the Eurasian Plate at a rate of 2 cm per year that creates every 200 years or so a series of great earthquakes.

Significant property damage and/or loss of life following an earthquake are an ever-present threat and apply to all natural disasters. The recent historical example is 1934 Bihar-Nepal earthquake that reached 8.4 on the Richter scale with an intensity of X. Over 8000 people died, 15,000 were injured and 200,000 houses destroyed. A large earthquake of magnitude 8 or more has not occurred in Nepal for last 69 years. It will occur but, When? Where? Another vital question is "are we well prepared for the impending earthquake?"

Kathmandu’s population and building construction has increased more than 10 times compared to time of the 1934 earthquake. The increased density of population and buildings in the city means that more people are at risk from earthquakes as compared to that of 69 years ago. If a major earthquake should strike now, the deaths and damages are feared to go up more than 10 folds. It is estimated that depending upon the time of the earthquake some 40,000 people could perish. The country has become much more vulnerable to seismic disaster than ever before due to rapid population expansion and uncontrolled urbanisation. This trend is intensifying rapidly everyday. The scale of potential human suffering will be much greater in terms of deaths, injuries, incidence of shock and bereavement incorporated with subsequent disease and long-term illness.

The science of disaster management is relatively young but significant advances in knowledge, understanding and technology have been made. Economic development is vital to disaster management. A strong economy provides the resources to undertake the physical measures required. Disaster prevention, mitigation, preparedness and relief are four elements that contribute to the implementation of sustainable seismic risk development policies.

The economic and social effects of earthquakes can be reduced through comprehensive assessments of seismic hazards and risks that lead to increased public awareness, seismically sensitive land use planning, and the implementation of seismically sound building construction codes. The social aspect is associated to prevention and protection of the society against strong earthquakes in order to save lives and protect economic assets. Critical analysis and assessment of the implications of the occurrence of seismic hazard is needed which are information comprising of both space and time related factors influencing the hazard. Reliable scientific damage and loss estimation are indispensable for hazard and risk analysis and emergency response planning. To reduce the earthquake risk, it is vital to have a clear understanding of how and why man-made structures fail during an earthquake. It is also important to explore the traditional indigenous technology structures that have survived past major earthquakes of Nepal. This native knowledge gives the opportunity to construct safer buildings and infrastructure networks to eliminate the causes of failure in new construction.

Lack of communication between people working on different natural disasters as well as between researchers, scientists and engineers working on the same type of disasters, could be one of the major reasons for the isolated treatment of natural disaster mitigation in the country. An across-border, multi-national, multi-disciplinary cooperation of various scientific groups, individual specialists in the field of seismology, including administrators, planners, engineers and researchers is necessary for an environmental protection and sustainable development of the country against the major earthquake.

Although various earthquake awareness programmes have been conducted in the past such as the Earthquake Safety Day jointly organised by governmental and non-governmental organisations, Nepal is yet to realise that scientific research in Earthquake seismology is also equally important. Earthquake technology transfer according to the nation’s need, quest for a high scientific and technological society, and high seismological research activities and outputs is vital in effective seismic risk mitigation.

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