Muscular dystrophy (MD)
is a group of
almost thirty genetic disorders that causes progressive degeneration of our
voluntary (or skeletal) muscles causing their weakness. Duchenne Muscular
Dystrophy is the most common form of muscular dystrophy that is caused by a
recessive sex-linked gene located on the X chromosome and carried only by
females. It usually affects boys and gradually as they grow there is weakness
of the muscles restricting their movements and eventually affects the muscles
involving breathing. It may affect the heart and lung functions too. There is
no cure for Muscular Dystrophy but there is ongoing research worldwide to
understand the condition better, prevent it and treat the inherited disorder so
that the quality of life can be improved for those affected by the different
variants of Muscular Dystrophy. It is estimated that every year there are
over 1600 children born with this condition in India.
Medindia spoke to Dr. V. Vishwanathan, DCH,
MRCP, Ph. D (Pediatric Neurology) Consultant Pediatric Neurologist and Founder
President, Muscular Dystrophy Association India, a project that has crossed
cultures and borders in research and facilities for improving the quality of
life for children affected by Muscular Dystrophy.
The NGO that he founded raises the level of
public awareness on Muscular Dystrophy. MDAI has been instrumental in starting
for the first time in India, a school exclusively for kids affected with MD.
MDAI is one of the centers listed and recognized by the Cooperative
International Neuromuscular Research Group (CINRG) — the global program on
Duchenne Muscular Dystrophy.
Q. What motivated you to begin the
Muscular Dystrophy Association India in Chennai in 2000?
For quite some years I was involved with a lot of
children affected by Muscular Dystrophy and their families during my several
research projects in India and abroad. When my good friend Dr. Gunter
Schuebraundt visited India, he suggested we begin an association that would
serve as a platform for researchers, doctors, patients and their families and
members of the community in general, to come together and lend a helping hand
to sufferers, especially children. What started in a small way on Feb 5th
2000 is now serving the needs of Muscular dystrophy patients in a big way,
thanks to the collaborative effort of many enthusiastic and generous supporters
Q. How does MDAI improve the lives of children
challenged by Muscular dystrophy and their families?
I would say MDAI is a facilitator for improving
the medical treatment and quality of life for children affected by Muscular
dystrophy. MDAI has a team of doctors,
physiotherapists, philanthropists and volunteers who explore ways and means
of reducing the suffering of MD patients and implement them. MDAI provides
assistance to families who cannot afford the investigation for a clear
diagnosis and gives free custom made wheel chairs and orthopedic appliances to
affected children. We offer psychological support for patients and families,
counseling them on how to deal with the challenge of coping with the disorder.
MDAI advises parents on the need for physiotherapy, provides the same in needy
cases and arranges fund raisers, outdoor visits and entertainment shows for patients
and their families.
In addition MDAI coordinates in organizing
conferences and meetings for parents and health professionals to facilitate
better understanding and treatment of the disorder, raise public awareness on
Muscular dystrophy and sensitize people to lend support to patients at home, in
schools, places of employment, and other public places.
Q. Recently MDAI's efforts made it possible
for India's first school exclusively for children with Muscular Dystrophy to
come up in Chennai. Tell us how it happened?
We've seen parents of children with Muscular
Dystrophy struggling to send their 'special' children to a normal school. We
decided to approach the Chennai Corporation commissioner with a request to
start a school for children with Muscular Dystrophy. It was a shot in the dark
with many people telling us it may not happen at all. We tried anyway and we
were able to convince the civic authorities and the state government to begin a
school that would cater to children with Muscular Dystrophy. The school was
opened recently by the Deputy Chief Minister of Tamilnadu, Mr. M.K. Stalin and
a new bus to pick up and drop children at home is scheduled to arrive within
the next 10 days.
Q. What would you consider as Muscular
Dystrophy Association India's big achievement?
It warms my heart to see people rising above
petty differences such as caste, creed and gender in their desire to reach out
to kids suffering from Muscular Dystrophy. Recently a child with MD required a
pap ventilator for survival and the parents could not afford the facility.
Another parent whose child died of the same disorder arranged for a pap
ventilator costing over a lakh rupees to ease the child's suffering. Similarly
we've seen a Muslim religious Trust pay for the medical expenses of a young
Hindu child who suffered from Muscular Dystrophy and needed IV infusion costing
Rs. 66, 000.
What started as a small initiative ten years ago
is now the hub for doctors, patients and families and civic bodies to improve
the quality of life for patients with Muscular Dystrophy. MDAI has been
instrumental in creating in Chennai, a lab for muscle diagnostics, a muscle
bank and is actively associated with international research bodies working to
find a cure for Muscular Dystrophy.
"Happiness is contagious. By giving
Dr. V. Vishwanathan, the driving force behind Muscular Dystrophy
Association India clearly belongs to the cadre of health experts who go beyond
the call of duty and put a smile on faces of patients and their families. Medindia
wishes MDAI all success in its endeavor to facilitate better medical treatment
and thereby improve the quality of lives of children afflicted by Muscular