Hemophilia – the alarming disease spreading rapidly in our country.
Relentless activities of Durgapur Chapter to fight with such disease.
When the whole world is concerned about the life threatening disease of Thalassemia, a good number of people are still remaining reluctant about the other life threatening disease like Hemophilia which is also spreading rapidly in our country. To combat with such a dreadful disease, Hemophilia Federation India (HFI) established in 1983 in our country and run by persons with Hemophilia (PWH) with the help from medical Fraternity as a self-help NGO. Now HFI represents India as National Member Organization at World Federation of Hemophilia, based in Canada. It also works in close collaboration with World Health Organization and NACO, especially in the area of safety vis a vis supply of blood products.
Considering this alarming position in our country some benevolent people like DD Sen, Subhajit Banerjee, Dr. P. Bhattacherjee, Dr. S. P. Mukherjee, Dr. M. K. Bagchi, Ajoy Roy, Dibendu Chakrabborty and many such eminent persons of Durgapur conducted the Hemophilia Movement in this city and established the Durgapur Chapter of Hemophilia Society at Satyajit Roy Sarani, City Center, Durgapur-16.
Ajoy Roy, Secretary of this Chapter says, “Way back in early 1999, some social activists and benevolent people with the support from some committed medical experts of the locality and the persons suffering from hemophilia and their families & well wishers decided to form a voluntary organization with the object of locating, educating, arranging proper treatment & rehabilitating the Hemophiliacs in the districts of Burdwan, Bankura, Birbhum, Purulia & Dhanbad ( Jharkhand). Thus Hemophilia Society-Durgapur Chapter (HSDC) came into existence. The society is registered as a no- profit , voluntary organization under West Bengal Registration of Society Act 1961 on 1st May’1999 Since then it is continuously engaged in its targeted field of action in spite of limited resources. We are affiliated to the Hemophilia Federation (India), New Delhi which is also affiliated to the World Federation of Hemophilia, Montreal, Canada.”
It is learnt from the honourable Faculty Members that persons with Hemophilia has one or more of the 10 (I, II, V, VII, VIII, IX, X, XI, XII, XIII) clotting factors in the blood, either missing or deficient. The absence of deficiency of any clotting factors in the blood but usually Factor VIII or factor IX causes Hemophilia. It affects males almost exclusively and is found d in all populations irrespective of caste, creed, religion or geographical variation. Thus males are sufferers of Hemophilia and females are the carriers who can pass on Hemophilia to the next generations.
“Hemophilia Society- Durgapur Chapter ( HSDC) started functioning with a few patients with hemophilia (PWHs) and located some more PWHs subsequently . Presently it’s PWHs member strength is 148. However, its target is to locate all the PWHs in its command area which is estimated to be around 1000 considering the population of the region. Present status of PWHs is as under:
| Our Area | Factor VIII | Factor IX | Von Wille brand's | TOTAL |
| BANKURA | 18 | 3 | 1 | 22 |
| BIRBHUM | 10 | 8 | 0 | 18 |
| BURDWAN | 67 | 17 | 4 | 88 |
| PURULIA | 10 | 2 | 0 | 12 |
| | 7 | 0 | 1 | 08 |
Dr. P. Bhattacherjee, Vice President of this Society says, “Hemophilia is a genetically transmitted, life-threatening, chronic bleeding disorder, which can disable the affected person when left untreated. This is an inherited bleeding disorder, transmitted on a gene of the X chromosome. The X chromosome is a gender determining chromosome, which makes hemophilia a gender-linked disorder. Therefore the female in the family becomes the carrier of the disease and almost exclusively the males inherit the carrier gene from their mother, suffer from the disease. Even though it is transmitted genetically, 20% of the reported cases are due to fresh mutation. People with Hemophilia (PWH) have a low level or absence of blood clotting factors in their blood. Deficiencies of Factor VIII & IX are the most common. The lack of clotting factor causes person with hemophilia (PWH) to bleed for longer period of time than normal. The main problem for PWH is internal bleeding, mainly into muscles and joints. Haemorrhage within joints and muscles, unless treated adequately with replacement therapy, results in painful, progressive joint damage and muscle atrophy: resulting in severe disability and limitations of daily activities with restriction in social participation. Though not curable Haemophilia can be managed with the infusion of life saving drug – Anti Hemophilic Factor (AHF). Unfortunately AHF is not manufactured in India and has to be imported from overseas. Due to exorbitant cost and general scarcity of AHF, most PWH resorts to wet blood transfusion, exposing themselves to blood borne diseases such as HIV and Hepatitis B/C. The incidence of this disorder is global, affects all ethnic groups & and 1 in every 10,000 people is born with this rare disorder. India being a population of over one billion has an estimated 1,00,000 PWH population”.
Dr. C. R. Mukherjee, Vice President (Medical) says, “There are different type of Hemophilia but the most common are deficiency of Factor VIII that is Hemophilia-A and deficiency of Factor IX that is Hemophilia-B. When a patient of hemophilia comes to the hospital with a major bleed, his survival depends on immediate administration of the life saving Anti Hemophilia Factor (AHF). For an intracranial bleed (bleeding in the head), a patient may require as much as 25,000 units of AHF costing Rs. 1 to 2 Lacs of rupees and this may even go up to 50,000 units plus of AHF, costing Rs 4-5 Lacs for any major surgical interventions. Unfortunately in most of the Government- run hospitals in India, the required AHF is not available and the only treatment given to the patients is the blood transfusion, which is only done to make up for the blood loss in case of external bleeding. ”
Secretary Shri Roy says further, “We have already appealed to the Government and the Corporate Sectors to come forward and join their hands with us and to extend their financial and other help and to provide free Anti Hemophilic Factor to all PWHs in West Bengal. Even we have appealed to all the benevolent people and other philanthropic organizations of this twin city to sponsor/contribute the cost of treatment of at least a child suffering with Hemophilia and also to bear the education cost of such children so that they can continue their studies also.” In fine he said that for the commendable activities of this chapter has got the Award by Bayer Health Care Pharmaceuticals, USA in 2006 for their project ‘Catch Them (Hemophilic) as Toddlers.’
Official says,” During this time many organizations like DSP, ADDA, DMC, Rotary Club, ASP and many benevolent persons and well wishers have already donated a good amount of money. But since the medicines and the treatments are very expensive until and unless we get help from the Government, it is hard for us to run such a unit for the benefit of the people in this vast Areas like, Burdwan, Asansol, Durgapur, Purulia and Dhanbad.”
Kanchan Kumar Chatterjee .
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