| Words from the President |
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My few words! |
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Dear Friends, Relatives and well-wishers
Let me share with you, we few parents are involved in parent organization
working in Nepal for general public awareness about Muscular Dystrophy
genetic disease, Parent Project Muscular Dystrophy (PPMD) Organization
and Muscular dystrophy disable children of Nepal for last 2 years
or so. If you feel this is the good cause of PPMD work in Nepal, what
ever you do, your every support would inspire us. If possible, please
forward our appeal to all your subscribers and others those who are
and who would be helpful for the good cause. Thank you for your
kind support and anticipation.
Sincerely yours,
Anil K. Upadhyay
President |
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Why is Muscular Dystrophy (MD) and Duchenne MD
a genetic killer in human beings ? |
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Muscular Dystrophy (MD) is one of the common
genetic diseases that cause weakening of the body muscles in early
childhood among human beings. Duchenne Muscular Dystrophy (DMD), one
sub-group classified under MD, has received a universal acceptance
that it affects only the male children. The available treatment for
DMD, till date, is found to be helpful only in increasing the life
span of the patients. No medical cure of the disease is found yet
to save the lives of the millions miserable patients all round the
world. The patient’s life is expected to be around 30 years
in the developed countries like USA, UK, and majority of the European
countries where as it is around 20 years or below in developing countries
including Nepal. The route cause of the death is attributed to the
secondary diseases namely Pneumonia, lungs infections, respiratory
difficulties, or heart complications; that finally appear to be a
worse and fetal among the patient with accelerating effects from on-going
weaknesses and deteriorations of the body muscles. The disease has
no cure yet!
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Parent Project Muscular Dystrophy Nepal (PPMD, Nepal) is
established with following objectives: |
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- Opening a diagnosis and research center to deal with Muscular
Dystrophy cases
- Establishing a national level rehabilitation center, and facilitating
participatory service management at local levels through regional
rehabilitation facilities for disables with Muscular Dystrophy
- Networking globally for information updates, sharing experiences
and disseminating findings,
- Counseling to the patients, parents & their families when
and where needed.
- Creating awareness on disease and sufferings among general
public, parents, professionals and concerned government and other
institutions in Nepal
- Availing minimum necessary medical equipment and supports on
handling the cases
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PPMD, Nepal link with global research organization: |
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PPMD, Nepal has maintained a good link with global research-organizations
and parent- organizations that serves in availing latest information
in the area of research on disease and necessary rehabilitation services
to the patients. From this perspective, we are proud that even at
the early stage of our establishment we are more informative about
the disease and counseling at our best for having a comfortable life-
style both of patients and their families with additional care for
providing prolonged life span of the patients. |
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This is our first experience that two medical professionals namely
Prof. Dr. J.P. Agrawal (Neuro-physician) and Lecturer Dr. Rohit Pokharel
(Orthopedic surgeon) from Nepal could attend an International conference
on Muscular Dystrophy held on Cincinnati, Ohio, USA in July 2003 organized
by Parent Project Muscular Dystrophy USA. PPMD, Nepal initiated and
organized this valuable participation first time for Nepal from health
sector that is responsible to understand and manage this disease at
country level. We think it has contributed a lot in developing a good
recognition in future of this overlooked disease scenario in the context
of Nepal. |
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Our situation and our basic needs: |
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It is needless to reiterate that we are poor not only in financial
term but also in behaviors in dealing with and supporting to the disabled
people of any sort they live in our surroundings. We as a parent organization
of Nepal has build a consensus among ourselves and are trying our
best - first to create awareness among people about Muscular Dystrophy
and then assisting disabled in their daily life movements of walking,
holding a fork, turning over the bed, changing cloth and sanitary
up-keeping. We few parents involved in this organization, are working
for creating awareness and supports to the disease sufferers in Nepal
with a goal of gradual expansion of services in Asia as a whole. |
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Based on our direct observation on several patients’ life-cycle
that starts from diagnosis of this disease till end of life, a regular
rehabilitation approach is imperative for the sake of promoting an
optimal health need, in a humanitarian ground as well. We believe
that adequate treatments will soon be developed and made available
to the poorer of the poor with the help of modern science and technology
that are well marketed in the industrialized countries. |
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PPMD, Nepal's Appeal |
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The profile of this disease can not be raised enough without public
awareness and advocacy. We cannot raise funds without awareness. Without
funds there is no research, without research there is no treatment
options, without options there is no cure and without cure there is
no more hope for LIFE. Without supports at individual level, we can
not work and help our children. |
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So, we need your help, your voice, and your choice of support
immediately now and forever!!! |
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PPMD, Nepal would like to make a humble request to you for your
help of any sort that could add significantly in bringing HOPE and
SMILE on the patients and their family. PPMD Nepal is not compelling
for any help. We will whole heartily accept any assistance, any amount
of help that comes. |
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