The first event kick-started to
mark the awareness week was the walkathon organized in association with the
Delhi Public School (DPS), North Bangalore. The walkathon took place at the
Central Library, Cubbon Park on Sunday 4
September. The principal from
DPS and several children took part to raise public awareness about the
condition. Volunteers from CARE (Charlie's Animal Rescue Centre) also
participated with their canine friends.
‘Transfer of stool from a healthy donor to the gastrointestinal tract of a patient with C. diff, have been effective for treating recurrent C. diff colitis.’
The culmination event for the
awareness week was held on 11
th September at the DART India lab in Bangalore. This big
event had a series of activities centered on the health and well-being of the
children with DMD. One of the main attractions was the art gallery showcasing
the artworks of the children. The artistic and expressive talent of the
children was visible in the boards displaying the colorful, attractive pieces.
This big day was inaugurated by
lighting the lamp with researchers, collaborators, friends and well-wishers
like Prof. Upendra Nongthomba from the Indian Institute of Science, Prof. Vijay
Chandru, Chairman, Strand Life Sciences and others. A major milestone for DART
lab was the inauguration of the physiotherapy unit which is important for the
children for rehabilitation and improvement of muscle tone. The unit also has
special equipment for checking out respiratory strength and breathing capacity.
The attraction that excited all
the children and adults alike was the bake sale with its yummy display of
goodies like custard, mousse, cupcakes and pastries. This was inaugurated by children like Karanveer and
Daivik amidst much gusto and enthusiasm.
To add a dash of rhyme and rhythm
to the event, there was the music corner with Karanveer and his rock band. This
music corner was inaugurated by Karanveer's school principal Ms. Manju
Balasubramanyam. The rock band entertained the group with a rendition of Pink
Floyd's "We don't need no education!"
DART also celebrated its
achievement in winning PTC Therapeutics' 2016 STRIVE award by cutting another
cake with icing to match the award certificate! After this began the free flow
of more fun and games and eats with a
chaat
corner serving up delicious
pani puri
and
papdi chaat all made by parents
of children. The children also enjoyed a round of light games and even won
prizes.
The event was rounded off with
distribution of a year's worth of medicine to underprivileged children.
For all those who attended the
event, the day was a wonderful memory of joy, happiness and adding to the
health and wellbeing of children with muscular dystrophy.
What is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy (DMD) is one of the
nine types of muscular dystrophy. This inherited genetic disorder leads to
progressive muscular degeneration and weakness. The gene that produces the
protein dystrophin is faulty thereby causing a near absence in production of
this vital protein required for muscle tone and strength. This disorder mainly
affects boys and appears in early childhood. It is usually noticed when the
child finds it difficult to attain normal developmental milestones like
standing and walking with ease. DMD is an x-linked disorder thereby transmitted
from mother to son.
Boys with DMD usually need to use
a wheelchair by the age 12-14
years. DMD slowly affects respiratory and cardiac muscles and some boys
may need additional oxygen therapies for steady breathing. Currently there is
no cure except physiotherapy, rehabilitation and steroid treatment. However,
there are many curatives on the anvil like
gene
therapy and exon skipping.
References :- What is Duchenne muscular dystrophy? - (https://www.mda.org/disease/duchenne-muscular-dystrophy)
- Duchenne Muscular Dystrophy (DMD) Awareness Week - (http://www.worldduchenneday.org/)
- What is Duchenne? - (http://www.cureduchenne.org/about-duchenne.html)
Source: Medindia
