Saturday, January 29, 2011

SEVAI runs a day care centre Muscular Dystrophy affected in Trichy

Muscular Dystrophy is a genetic disease which has no cure. This generally affects young children. In this disease gradual deterioration of muscles occurs and slowly the patient is unable to do any movements. Muscular Dystrophy is an inherited disease. It is characterized by progressive weakness of the muscles which control movement. There are a variety of dystrophies and the inheritance pattern varies with each type. Most of the dystrophies affect young children. The major forms of MD include myotonic, Duchenne, Becker, limb-girdle, facioscapulohumeral, congenital, oculopharyngeal, distal and Emery-Dreifuss.Duchenne Dystrophy is the most common dystrophy that occurs in children and has a sex-linked recessive inheritance. This means it affects boys, and females are carriers of the disease. All the voluntary muscles of the body are involved in the dystrophic process, some more and some less. For example the muscles involved in chewing food are least affected while respiratory muscles are involved late in the disease. Limb girdle muscles are most involved. As life advances these children loose various functions. First, walking is affected, later they find difficulty in rising from sitting posture. Soon they take to the wheel chair. Though their brain functions normally, the muscles slowly keep deteriorating, and pretty soon independent existence becomes impossible. The life span of these children is cut short and they usually die around 16-20 years of age. In view of the above some like-minded doctors and social workers got together in 1973 and founded Muscular Dystrophy Society. A day care home for the persons affected with muscular dystrophy established by SEVAI, a voluntary organisation, at Allur, with the support of the Differently Abled Welfare Department were declared open by Transport Minister K.N.Nehru recently.

Speaking on the occasion, the Minister said nearly 3,000 differently abled persons were provided welfare assistance to the tune of Rs.5.85 crore in Tiruchi district in the last four and half years. Over 32,162 different abled persons were provided national identity cards and 6,366 such persons were given free bus passes in the last four and half years in Tiruchi district.Mr.Nehru who released a booklet containing the welfare schemes and also training for the physically challenged also handed over the keys of 100 houses built for differently abled at Amoor village in Musiri block in the district. District Collector Mahesan Kasirajan, Dr.Mohanasundaram, Joint Director of Medical Services, Augustin Peter Fathima, Additional Chief Educational Officer, Sarva Shiksha Abhiyan and other officials were present on the occasion. The aim of the society was to give cheer to the afflicted as there is no treatment available. The Society has concentrated on improving their life style, increase their ability to stand and walk for more number of years. The genetic defect of each type of dystrophy is now recognized and soon treatment related to this genetic knowledge may be introduced. In order to keep pace with the world, the Society is now trying hard to expand its activities and introduce genetic research in India. Funds are difficult to come by and the Society appeals to one and all to donate generously.

Many people don't know much about muscular dystrophy. Yet a quarter of a million kids and adults are living with the disease, so chances are you may know someone who has it. Muscular dystrophy (MD) is a genetic disorder that weakens the muscles that help the body move. People with MD have incorrect or missing information in their genes, which prevents them from making the proteins they need for healthy muscles. Because MD is genetic, people are born with the problem — it's not contagious and you can't catch it from someone who has it.MD weakens muscles over time, so children, teens, and adults who have the disease can gradually lose the ability to do the things most people take for granted, like walking or sitting up. Someone with MD might start having muscle problems as a baby or their symptoms might start later. Some people even develop MD as adults. Several major forms of muscular dystrophy can affect teens, each of which weakens different muscle groups in various ways: Duchenne muscular dystrophy (DMD), the most common type of the disease, is caused by a problem with the gene that makes a protein called dystrophin. This protein helps muscle cells keep their shape and strength. Without it, muscles break down and a person gradually becomes weaker. DMD affects boys. Symptoms usually start between ages 2 and 6. By age 10 or 12, kids with DMD often need to use a wheelchair. The heart may also be affected, and people with DMD need to be followed closely by a lung and heart specialist. They can also develop scoliosis (curvature of the spine) and tightness in their joints. Over time, even the muscles that control breathing get weaker, and a person might need a ventilator to breathe. People with DMD usually do not survive beyond their late teens or early adulthood. Becker muscular dystrophy (BMD), like DMD, affects boys. The disease is very similar to DMD, but its symptoms may start later and can be less severe. With BMD, symptoms like muscle breakdown and weakness sometimes don't begin until age 10 or even in adulthood. People with BMD can also have breathing, heart, bone, muscle, and joint problems. Many people with BMD can live long, active lives without using a wheelchair. How long a person with BMD can live varies depending on the severity of any breathing and heart problems. Emery-Dreifuss (pronounced: em-uh-ree dry-fuss) muscular dystrophy (EDMD) typically starts causing symptoms in late childhood to early teens and sometimes as late as age 25. EDMD is another form of muscular dystrophy that affects mostly boys. It involves muscles in the shoulders, upper arms, and shins, and it often causes joint problems (joints can become tighter in people with EDMD). The heart muscle may also be affected. Limb-girdle muscular dystrophy (LGMD) affects boys and girls equally, weakening muscles in the shoulders and upper arms and around the hips and thighs. LGMD can begin as early as childhood or as late as mid-adulthood and it often progresses slowly. Over time, a wheelchair might be necessary to get around. There are many different types of LGMD, each with its own specific features. Facioscapulohumeral (pronounced: fa-she-o-skap-you-lo-hyoo-meh-rul) muscular dystrophy (FSHD) can affect both guys and girls, and it usually begins during the teens or early adulthood. FSHD affects muscles in the face and shoulders and sometimes causes weakness in the lower legs. People with this type of MD might have trouble raising their arms, whistling, or tightly closing their eyes. How much a person with this form of muscular dystrophy is affected by the condition varies from person to person. It can be quite mild in some people. Myotonic (pronounced: my-uh-tah-nick) dystrophy (MMD) is a form of muscular dystrophy in which the muscles have difficulty relaxing. In teens, it can cause a number of problems, including muscle weakness and wasting (where the muscles shrink over time), cataracts, and heart problems. Congenital muscular dystrophy (CMD) is the term for all types of MD that show signs in babies and young children, although the MD isn't always diagnosed right away. Like other forms of MD, CMD involves muscle weakness and poor muscle tone. Occurring in both girls and boys, it can have different symptoms. It varies in how severely it affects people and how quickly or slowly it worsens. In rare cases, CMD can cause learning or intellectual disabilities. The life expectancy (in other words, how long a person may live) for many of these forms of muscular dystrophy depends on the degree to which a person's muscles are weakened as well as how much the heart and lungs are affected. Nectar “T” is of a great importance Natural Nutrition that helps to delay the progress of the disease, succeed better stability & strength and avoid or delay serious complications that are related with Muscular Dystrophy (i.e. Heart failure, Respiratory failure, e.t.c).The NECTAR “T” Daily Nutrition Programme was created in 1993 by John Bazakis after his daughter was diagnosed with Friedreichs Ataxia (a disease similar to Muscular Dystrophy) The NECTAR “T” Daily Nutrition Programme is a very rare natural daily nutrition, based to a combination of fresh pure beehive products that are capable to boost the immune system and heal the muscle wounds in an absolute natural way The. NECTAR “T” Daily Nutrition Programme is the same program the Queen Bees follow daily that makes them invulnerable from diseases and capable to be almost immortal (due to this nutrition they live 40 times more than other bees!!).Nectar “T” aims: to Slow down the speed at which the disease progresses in order, to Avoid or delay , dangerous for the life of patients complications that are related with Muscular Dystrophy and appear in the depth of time ( i.e Muscle damage , Heart failure , respiratory problems , Diabetes , e.t.c ), to Reduce CPK levels, to Avoid other diseases that can worsen the gravely situation of the patients, to Extend the time of life, to Succeed a better quality of life, to Give Muscular Dystrophy patients the extra time they need to stand firm and happily welcome the cure to Muscular Dystrophy in a few years' time. As you probably already know, MD is a genetic illness. That means that various organs of the human body (i.e Muscles, Heart, Respiratory system, Vision. Hearing e.t.c) are attacked continuously due to genetic disorders. The Role of Nectar “T” is to boost the human system (the same way with Queen Bees) in order to protect the organs that are attacked. This continuously confront of the attacked organs from Nectar “T” has as a result , the delay of the progress of the disease and in some cases , succeeds , avoidance of dangerous and risky for the life of patients complications .Cases of Muscular Dystrophy treated with Nectar “T”, Treatment for Duchene Muscular dystrophy, Treatment for Becker muscular dystrophy, Treatment for Myotonic muscular dystrophy, Treatment for FSH Facioscapulohumeral muscular dystrophy, Treatment for Congenital muscular dystrophy, Treatment for Friedreich's Ataxia , Treatment for LGMD - Beta arcoglycanopaty. The Nectar “T” is a natural pure fresh substance without any adverse reactions .Nectar "T" facilitates all treatments for better results, Nectar "T" can be taken additionally with any other treatments since it facilitates them to attribute better results. Patients M.D Neurologists observations during the Nectar “T” nutrition, The opinion and observations of your Medical Neurologist during the Nectar “T” nutrition will be very helpful to us. Royal Cells Institute is in continuous communication with patients in order to observe their progress related with the Nectar T daily doses and help them. Speakers at a seminar on muscular dystrophy have presented to the State government a slew of proposals to improve treatment and care of persons with the debilitating condition. Muscular dystrophy is a hereditary disease which affects the muscles and nerves, resulting in the person remaining dependent on a wheelchair for life. The rehabilitation medicine experts called for establishment of clinics for muscular dystrophy in every medical college and district headquarter hospitals, in certain areas in the State there were more persons with muscular dystrophy but they remained undiagnosed and hence received no treatment. Experts’ requests government to conduct statewide statistical disease surveillance. “As a pilot study, a northern district and a southern district should be taken up,” “It is needed a separate ward for muscular dystrophy patients. There is need for a diagnostic centre that would include a genetic laboratory to conduct muscle testing and enzyme studies in the State. The laboratory could be established in either the Government General Hospital or the Institute of Child Health,” experts said. Testing for the genetic condition would enable doctors to identify the mutation in genes and classify the disease accordingly, said K.Govindaraju, Director, SEVAI. He said technical expertise could be sought to fabricate mobility aid to suit the needs of the patients. The speakers also recommended that medical and surgical treatment of the patients should be brought under the health insurance scheme of the State government. The government benefits to such persons should be increased on a par with what is given to persons with multiple disabilities, they added. -Govin

1 comment:

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