What is Hemophilia? Hemophilia is an inherited and life long disorder with repeated episode
of bleeding.There are thirteen clotting factors in the blood, which are responsible to
check ourbleeding during bleeding episodes. One or more clotting factors mostly VIII or IX
are absent or very less amount in person with hemophilia due to irregularity in X chromosome.
Due to less amount of factor VIII or IX in blood, the proper formation of fibrin net
do not take place, where the blood is coming from. The bleeding commonly occurs in
big joints like knee, ankles & hips. The person having hemophilia bleeds Excessively.
In the lack of proper treatments and management the PWHs become disabled.
Not many people know about hemophilia in India. In the crowd of various other diseases,
it attracts no attention of the general public and finds no place on the priorities
of health authorities. For this reason, facilities for its treatment are hardly available
in government or even in the private sector. There is hardly any support from
the government and a patient has to pay for his treatment. The absence of Government's
support has made the treatment of Hemophilia very expensive. The cost for stopping even
a minor bleed is more expensive than, one month's salary of an average person.
Five hemophilic brothers- We have a very pathetic story of five Hemophilic brothers living in India at Distt.
Jaunpur of U.P. state. Among those, Vipin singh of 23 years is totally disabled
and other brothers partially disabled respectively. But if they don't be treated adequately
within the time during bleeding episodes, all of them will loose their joints gradually like elder brother.
At present their parents have not any source of income for their survival. Their uncle helps them much.
It is very tough job for them to take factor to save their joints in the immense crisis of money.
Their married sister could not bear the problem in hemophilia and ultimately committed suicide to avoid
the birth of new child with hemophilia.
Hemophilia society Varanasi Chapter is doing its level best to rehabilitate them. In this regard they
are being provided free clotting factors as they are needed. All of them have been attending the
local camps organized by the society. Hemophilia society has its own limitations.
Society is totally dependents on generous donations. How this life saving helps can be sustained longer ?
Hemophilia Care Centre:-
Hemophilia Society Varanasi Chapter is constructing a Comprehensive Care Unit for the Hemophilia patient.
This is only one Care Centre Cum Rehabilitation Centre providing total care for the persons having hemophilia of Eastern U.P.
There will be different departments under one roof viz. Physiotherapy deptt., Pathology, Rehabilitation Centre
(Computer, Electronics etc.)Hemophilia Carrier Training Centre, OPD, Operation Theater, Conference Hall etc.
1- Mobile Services- There will be well equipped Ambulance to spread Awareness among the peoples as well as to locate new
hemophilic patient in our working area. Mobile services will be provided to the patient during the bleeding episodes as emergency
along with the conveyance of persons having hemophilia.
2- Hemophilia Carrier Training Centre-
3- Psycho-Social Support to Persons having hemophilia & Females (Mothers, Sisters etc.)
4- Well equipped Physiotherapy Centre-
6- Rehabilitation Centre for PWHs
7- Blood Coagulation (Factor Essay, blood group etc.)
Hemophilia Summer Camp 2006
Hemophilia Society Varanasi Chapter organized a five days Hemophilia summer Camp from 13-17 April 2006 having 37 persons with hemophilia.
The camp was inaugurated by Mr. Ashok Dhawan (Member) Vidhan Parishad.Lucknow. The Chief guest of Hemophilia Summer Camp 2006
after praising the Society's services concerning the PWHs and said I am ready to support, whatever the president of
Hemophilia Society Varanasi Chapter Dr. V.P. Singh says. Inspite all, he also made promise to give financial support as much as possible for the
"Hemophilia Care & Rehabilitation Centre " at Varanasi Chapter. At the end, the Chief guest of World Hemophilia Day + Patrick D'Souza (Bishop) Varanasi,
being impressed accepted the designation of Patron of the Chatper.
For forther information-
Hemophilia Society Varanasi Chapter
Sandeep Kumar Pandey (Resource Manager)
C/o Deepak Electronics, Ruppanpur (Natui)
Sarnath Road, Varanasi-221 007, Uttar Pradesh
(INDIA)
Phone- +91-9336900499, Email- homovns@sancharnet.in, info_sansadh@yahoo.co.in,
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Celebration of Disability Day
Picture of Knee synovities
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Scaning of Cripple knees
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A mouth bleeding boy
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