Close to 300 people in Pune suffer from Haemophilia
The Haemophilia Society of Maharashtra is also working towards creating awareness and is planning to take the help of NGOspune Updated: Aug 14, 2017 14:46 IST
Haemophilia is a bleeding disorder where the blood does not clot properly and can lead to disabilities in many patients. Former president of HFI and secretary of Haemophilia Society of Maharashtra (Pune chapter) Anil Lalwani shared with Jui Dharwadkar the work carried out by the society towards generating awareness about the ailment. A haemophilia patient, Lalwani (59) has been associated with HFI since 1983, and Haemophilia Society of Maharashtra, Pune chapter since its inception in 1992.
What are the problems faced by people suffering from haemophilia?
People who have haemophilia bleed easily. Many times the bleeding is caused without a reason. This is called spontaneous bleeding. There is bleeding also in joints and muscles. With time, the bleeding damages the joints and muscles. It can also lead to disability. Hence, early diagnosis of the disease and taking necessary treatment since a very early age is very important.
What are the problems that you face due to haemophilia?
I have been suffering from haemophilia since I was six-year-old. Recently, I had to get the knee joint replacement surgery done as my joints were damaged by bleeding. The problem with bleeding is that it damages the joints and muscles and causes difficulty in movement as age advances.
What is the cost of treatment for haemophilia?
The cost of treatment is very high. Whenever there is bleeding, people have to take the necessary injections which cost something between Rs.15,000 and Rs.20,000 per injection. When there is bleeding in joints or muscles, two-three injections are enough but some patients have to take injections frequently. To address the issue, we have been emphasising the need for the government to support the treatment of patients of haemophilia.
What are the objectives of Haemophilia Society of Maharashtra, Pune Chapter?
We are working towards locating and diagnosing people who have symptoms of haemophilia. Presently, there are close to 5,000 members registered with Haemophilia Society of Maharashtra who are suffering from the ailment, including 250-300 people from Pune alone.
Is there enough awareness about haemophilia?
Awareness about haemophilia is not enough. The Haemophilia Society of Maharashtra is also working towards creating awareness and is planning to take the help of NGOs. We write articles to make people understand the disease and approach us if they experience any symptoms. Compared to urban cities the awareness about haemophilia is very low in rural parts. As a society, we are trying to reach out to the rural areas as well.