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A Mission Towards Mankind's Muscular Dystrophy

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28 Sep, 20 05:48
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- Dr.Prabhat Kumar Singhal

A Mission Towards Mankind's Muscular Dystrophy

Muscular Dystrophy in the entire country is a type of among  other disabilities. It requires proper attention and care. Due to Lake of required awareness creation about this disease,It is neglected , many persons are suffring with Muscular Dystrophy.It is cuereble by proper Physiotherapy, Hydrotherapy and Regular Medical Check-ups - General medical check-ups by professional doctors.To create greater awareness of Muscular Dystrophy to reach out to each and every person afflicted with Muscular Dystrophy in India and abroad and attempt to provide as normal, a life as possible by appropriate interventions.To create a center where all specialized services for treatment and rehabilitation can be provided under one roof for persons afflicted with Muscular Dystrophy.There are many types of muscular dystrophy.Duchenne muscular dystrophy, Becker muscular dystrophy,Congenital muscular dystrophy,Emery Dreifuss muscular dystrophy, Facioscapulohumeral muscular dystrophy,Limb-Girdle muscular dystrophy, Myotonic muscular dystrophy and Occulopharyngeal muscular dystrophy are commom.Symptoms vary with different types of muscular dystrophy and include. Muscle weakness that slowly gets worse Bulged out calf muscles, Drooping Shoulders, Scoliosis of Spine Frequent falls, Wadding Gait, Loss in muscle size, Loss of strength in a muscle or group of muscles as an adult.Delayed onset of the disease causes huge mental trauma to the patient and the family -who try to “find a cure” – at any cost. Leading a life of despondence, isolation and fear not knowing what is happening and why? 100% dependence on others, for basic day to day living and survival.
MD shortens the natural life-span.A normal person cannot imagine the state of disability and pain of the sufferer.Indian Association of Muscular Dystrophy (IAMD) is a registered society of India working mainly in the field of  in the state of Himachal since 1992. This is one of the oldest societies of India to work for the cause of MD. In its initial years IAMD worked towards the  organized 1-3 days awareness and activity camps in north India and provided one platform to almost 5000 MD patients and their families where they could discuss and find solutions to their problems.The Indian Association of Muscular Dystrophy has established a 50 bedded Integrated Muscular Dystrophy Rehabilitation Center- “Manav Mandir” in Solan (H.P), for the rehabilitation and management training for the patients of Muscular Dystrophy and their families. The outdoor and indoor services at this center started in January 2017.This is a seven-storied building, out of which 5 stories are being utilized and the rest are under construction. The entire area is 277.54 Sq. Meters. The center is very sunny and scenic and is surrounded by beautiful hills and valleys. The entire building is wheelchair accessible. The center is a little away from the hustle-bustle of the town to provide peace and quiet to the participants but well connected with the city center.
SERVICES AT ‘MANAV MANDIR
Physiotherapy - Physiotherapy is the only known cure for muscular dystrophy, and we are now offering state of the art therapy with special gadgets. The Physiotherapy hall can accommodate 50 patients at one time. This spacious south-facing room is well lit and overlooks the beautiful valley from its big glass windows. Soft melodious music adds to the atmosphere.  
Hydrotherapy - Hydrotherapy has been outlined by doctors as excellent treatment. It is believed that it improves and maintains mobility, strength, and flexibility of muscles, and is a good form of aerobic exercise. IMDRC has a temperature-controlled ‘indoor pool’ and ‘steam’ facility for all its patients. The pool is 4.75 Meters by 8.75 Meters. We use special equipment for exercises in water under the guidance of our trained staff.
DNA & Carrier testing -We facilitate DNA and carrier testing. The samples are collected at our center and sent to CCNB Hyderabad. Genetic Counselling is also being offered on a regular basis by professional doctors.DR. CHANDAK FROM CENTRE FOR CELLULAR, DR. VINAY GOYAL FROM AIMS DELHI MOLECULAR BIOLOGY HYDERABAD.
Psychological Counselling -It is an important part of the rehabilitation process. The President and the Secretary of IAMD are MD afflicts themselves and are managing their lives successfully. They contributing their valuable time and support to counsel all the affected individuals having similar conditions on a regular basis.
Dental Check-up -For a person afflicted with Muscular Dystrophy, dental care gets neglected as it tends to become their last priority. Keeping this in view, free dental check-ups and hygiene counselling is provided by Mathuram DAV Dental College, Solan, from time to time.
Meditation and Yog Pranayam - These give tremendous positive energy and support to the afflicts of Muscular Dystrophy and their families. The Meditation and Yog-Pranayam sessions are mandatory at IMDRC and are being supervised by an Ayurvedic Doctor and a Yoga trainer.
Diet Plan - A planned and nutritious diet is an integral part of the residential camp at the center- “Manav Mandir”. The afflicts also receive nutritional guidance and detailed diet plans to take back with them from trained dieticians. In order to bridge the social gap, we have introduced outdoor fun activities called ‘picnics’ that help us bond with each other, with our community and our environment.
Recreational Activities -  Volunteers from regional Educational Institutions regularly participate in evening recreational activities. This enhances the spirits and motivates the afflicts and their families.It is progressive, which makes it more severe than other disabilities.
No awareness programme by the Government. Due to ack of awareness, people who are diagnosed with MD, lose their time, money and energy with false God-men, some even try to hide the patient from society – causing even more distress to the sufferer.Due to lack of genetic counselling, it is not possible to initiate steps to prevent the disease. Medical fraternity by and large shows little inclination, there have been several cases of irreversible damage in patients living with MD.Absence of specialised institutes for medical care.Very little diagnostic and testing facility, specific to muscular dystrophy.At times, muscular dystrophy is confused with polio.No Government agency working in this field. IAMD has established an apex centre in the name of Integrated Muscular Dystrophy Rehabilitation Centre (IMDRC) “Manav Mandir”in Solan Himachal Pradesh , a residential facility-for 25, will be increased to 50.We provide here complete care and management for Muscular Dystrophy afflicts. IAMD incurs an expenditure of Rupees Five lakhs per month to provide these facilities.

 


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