17 April 2010
By Archana Mishra
For Subhanshu Kashyap, the journey of life has never been easy. At a time when his fellow comrades participated in outdoor sports events, Subhanshu reluctantly sat in a corner. All he could do is to cheer them. The reason for the hardship was that Subhanshu is a patient of haemophilia since past 18 years – a genetic disorder. Subhanshu was well aware of the fact that one minor injury will immediately land him up in the hospital.
Haemophilia – the disorder that impairs the body’s ability to control bleeding, paved two ways for Subhanshu – to live his life in depression or to live a normal life with grit and determination and some elementary precautions. Undoubtedly, he chose the second path. But what makes him helpless is the limited access to clotting factors after active bleeding episodes.
There are several others who fall in the same league as his. Under the grip of the disorder, they have to get themselves injected with haemophiliac factors at Lala Lajpat Rai (LLR) hospital – an associate hospital of Ganesh Shankar Vidyarthi Memorial (GSVM) Medical College.
Though the medical college promises to provide free medication facility to patients suffering from bleeding disorder but to avail free injections that costs more than Rs 3,000 in the market, the patients have to wait for long hours. First to get themselves examined by doctors and then to initiate treatment.
However, haemophilia is a group of hereditary genetic disorders that impair the body’s ability to control bleeding. This can be ascribed to either a deficiency or complete absence of certain clotting factors required in blood clotting. Therefore, after an injury or an accident, it might take long for patients of haemophilia to get their blood clot. Also there are chances of internal bleeding, especially in joints and muscles and at times, in vital organs like brain. In turn, there are painful joint deformities, pseudo tumours and brain damage leading to permanent disability and even death of a person.
The pace of bleeding with haemophiliac might not be faster than a normal person, but it might stretch upto a longer period of time. What is a matter of worry for a haemophiliac is the uncontrolled internal bleeding which can begin spontaneously without any apparent cause, believe the health experts. They said: “The uncontrolled internal bleeding, if not stopped immediately and with appropriate treatment, would result in pain and swelling. Over a period of time, bleeding into joints and muscles can cause permanent damage and chronic pain.”
For providing the medication, the Haemophiliac Treatment Centre at LLR started in 2009. The haemophiliacs have been registered at the treatment centre. But they are devoid of timely treatment which is of prime importance.
Also, the hospital authorities have assigned only few hours to get an injection with clotting factors and on Sundays, the demands are not catered as the centre tends to remain closed.
When TOI team inspected the treatment centre, it was found that haemophiliac patients with injuries in their leg and were unable to walk, were asked to cover a distance of one kilometre in the absence of wheel chair and stretcher to get themselves examined.
For instance, a father carried his 18-year-old son on his back and was running from one department seeking immediate treatment. Aggrieved by the medical college authorities, Subhanshu’s father, Jayesh Kashyap who is also the member of Kanpur Haemophiliac Society said: “The haemophiliac patients are registered by the centre, but still they are made to run here and there to get the forms signed by three different doctors. For long hours, one has to bear the pain, to first get themselves examined and then to receive appropriate medication.”
He went on to add: “Moreover, with every visit, we have to purchase gloves for the doctors, also needles scalpel, spirit and syringes to get our children injected with Factor VIII and IX. To add, we are badly treated by the resident doctors and nurses.” When questioned the superintendent-in-chief LLR Dr VN Tripathi, he said: “We are already spending a huge amount of Rs 3.75 crore for the treatment of the patients. Earlier, we lacked on many things but now we have sufficient stock to give timely treatment to the patients.”
According to the World Health Organisation, more than 400,000 people in the world have haemophilia, corresponding to a prevalence of 15 to 20 in every 100,000 males born worldwide. India has estimated 80,000 haemophilia patients and approximately 12,000 have been diagnosed.
Are we really aware?
- Haemophilia is genetic disorder that prevents blood from forming an effective clot
- Haemophilia is usually caused due to deficiency of clotting factor VIII or IX in the blood. The normal level of clotting factor varies between 50% & 150%, whereas in people with haemophilia (PWH), the clotting factor could be as low as %.
- The two most common types of haemophilia are: - Haemophilia A or Factor VIII deficiency - Haemophilia B or Factor IX deficiency.
- Haemophilia is an inherited bleeding disorder, and it is usually passed from the mother to a son. It always occurs in males.
- Early treatment for bleeding is important to prevent or limit damage to joints, muscles, or other parts of the body.
- The main treatment for haemophilia is injecting the low or missing clotting (anti-haemophiliac) factors directly into the bloodstream.
There are various types of ‘haemophilia’ depending on which particular clotting factor is missing
- Haemophilia A represents 90% of the haemophilia cases. It involves lack of functional clotting factor VIII.
- Less severe than Haemophilia A is Haemophilia B, which involves lack of functional clotting factor IX.
- Haemophilia C is also a genetic disorder involving lack of functional clotting factor XI.
- Protect toddlers with knee pads, elbow pads, and protective helmets. All children should wear safety helmets when riding bicycles.
- Be sure to use safety belts and straps in highchairs, car seats, and strollers to protect the child from falling.
- Remove furniture with sharp corners or pad them to ensure that toddlers stay safe.
- Check play equipment and outdoor play areas for possible hazards.
- Haemophiliac children must be informed about all aspects of the disease