World hemophilia day: Though you have a disability youre not classified as disabled says patient
April 17 is World Hemophilia Day
Imagine living a life where you’re constantly worried about getting a graze or even a minor bruise. While your daily commute which includes catching a local train or even traveling by buses might be a routine activity for you, it is not the same for people living with hemophilia. ‘Living with this bleeding disorder comes with its own set of challenges that not many people are aware of. Hemophilia patients have to take many precautions on a daily basis,’ says Rupal Panchal (42), who is the interim VP of the Hemophilia Federation of India (HFI) and a hemophilia patient himself.
The Mumbai resident was diagnosed with the disease when he was only a one-year-old and since then, Panchal says he has had to face several challenges just to lead a normal life because of his condition. So, what is hemophilia? In this disorder, the patients’ blood does not clot normally because of which they bleed for a much longer time after an injury as compared to others. The bleeding could also occur internally in severe cases or when hemophilia is left untreated. This can result in the patient’s organs and tissues getting damaged and could also be life threatening.
It is estimated that there are close to 100,000 people living with hemophilia in India [1], however, due to lack of awareness and diagnosis, only 18,000 patients are registered with the HFI. ‘I was lucky to have got diagnosed with hemophilia B at such a young age because if left untreated, it becomes very problematic to deal with. Due to my condition, my parents decided not to have a second child as my mother is a carrier,’ says Panchal. As hemophilia is a genetic disorder, it is passed from parents to the child and treatment involves replacing the missing blood clotting factor by injecting clotting factors into the patient’s vein.
Growing up with hemophilia
Hemophilia drugs or factors aren’t manufactured in India and they were first imported by the HFI only in 1988 at a fraction of the cost on humanitarian grounds. So that meant, Panchal had to rely on regular blood transfusions while growing up with the disease. ‘The biggest problem hemophilia patients faced back then was that there were no medicines available to treat it, so we underwent transfusions of plasma, as it contains proteins that help the blood to clot,’ says Panchal,
As a student, he missed many days of school and even college due to prolonged hospital stays or visits. After years of undergoing these regular blood transfusions, Panchal was diagnosed with hepatitis C nearly 20 years ago. ‘I found that out that I got hepatitis C through the regular transfusions and so did some of the other patients fighting against hemophilia. The problem was that plasma doesn’t heal the body the same way the drugs which are available now can,’ he said. A patient’s transfusions requirements are unpredictable, as they need at least 50,000 units of plasma every year that can cost up to Rs 7.5 lakhs. Here’s what you need to know about the treatment of hemophilia.
Other than that, he says living with hemophilia means constantly compromising on your goals and dreams. ‘I was always a good student, but despite that I couldn’t opt for science as it involves a lot of legwork and long hours in college. So instead, I had to study commerce and take up a sedentary lifestyle so my health doesn’t get affected. Living with hemophilia is like living with a disability,’ says Panchal, who works as a chartered accountant. He juggles his job along with advocating for the rights of patients living with hemophilia in India.
While treatment for the disease is very expensive, Panchal filed a petition in 2011 demanding free medicines for hemophilia patients in Maharashtra. Today, patients can avail free medicines in certain centers across the state, however, despite that positive move, he admits that the availability of the drugs is still an issue. States such as Delhi and Uttar Pradesh also provide hemophilia treatment free of cost. These are the 5 interesting facts about hemophilia you didn’t know.
The challenges
One of the biggest problems faced by hemophilia patients is trying to get a job of their choice. Many organizations are hesitant about hiring people living with hemophilia because of which they tend to miss out on many opportunities to move ahead in their career. ‘Over the years, I have had to hide the fact that I have hemophilia from a few employers. I would disclose my condition only if I knew my employer personally because of the fear that they wouldn’t hire me otherwise. Hemophilia patients should be given support and equal opportunities by corporates as living with this disease is the same as being a disabled person,’ he says.
As of now, there is a pending bill in the Lok Sabha for adding hemophilia and thalassemia patients to the disabled category so they can also be eligible for reservations and jobs. ‘Once we have the rights, we can also gain access to meaningful employment,’ adds Panchal. This is because hemophilia has high disability rates can have a negative impact on a patient’s productivity and also the ability to have a successful career
In a study that included a sample of 148 patients with severe hemophilia, physical disability was present in 79 and 68% patients who were between the ages 13–24 years, respectively [1]. These high disability rates have a severe negative impact on productivity and the patient’s ability to have a successful job or career. In fact, the HFI has been trying for more than two decades for the inclusion of hemophilia in the persons with Disabilities Bill. Read: A hemophiliac’s journey to fatherhood.
Image Source: Patient’s own pic
Reference:
[1] Phadke S. Hemophilia Care in India: A Review and Experience from a Tertiary Care Centre in Uttar Pradesh. Indian Journal of Hematology & Blood Transfusion. 2011;27(3):121-126. doi:10.1007/s12288-011-0084-0.
from » News , Health, Health Nes
Imagine living a life where you’re constantly worried about getting a graze or even a minor bruise. While your daily commute which includes catching a local train or even traveling by buses might be a routine activity for you, it is not the same for people living with hemophilia. ‘Living with this bleeding disorder comes with its own set of challenges that not many people are aware of. Hemophilia patients have to take many precautions on a daily basis,’ says Rupal Panchal (42), who is the interim VP of the Hemophilia Federation of India (HFI) and a hemophilia patient himself.The Mumbai resident was diagnosed with the disease when he was only a one-year-old and since then, Panchal says he has had to face several challenges just to lead a normal life because of his condition. So, what is hemophilia? In this disorder, the patients’ blood does not clot normally because of which they bleed for a much longer time after an injury as compared to others. The bleeding could also occur internally in severe cases or when hemophilia is left untreated. This can result in the patient’s organs and tissues getting damaged and could also be life threatening.
It is estimated that there are close to 100,000 people living with hemophilia in India [1], however, due to lack of awareness and diagnosis, only 18,000 patients are registered with the HFI. ‘I was lucky to have got diagnosed with hemophilia B at such a young age because if left untreated, it becomes very problematic to deal with. Due to my condition, my parents decided not to have a second child as my mother is a carrier,’ says Panchal. As hemophilia is a genetic disorder, it is passed from parents to the child and treatment involves replacing the missing blood clotting factor by injecting clotting factors into the patient’s vein.
Growing up with hemophilia
Hemophilia drugs or factors aren’t manufactured in India and they were first imported by the HFI only in 1988 at a fraction of the cost on humanitarian grounds. So that meant, Panchal had to rely on regular blood transfusions while growing up with the disease. ‘The biggest problem hemophilia patients faced back then was that there were no medicines available to treat it, so we underwent transfusions of plasma, as it contains proteins that help the blood to clot,’ says Panchal,
As a student, he missed many days of school and even college due to prolonged hospital stays or visits. After years of undergoing these regular blood transfusions, Panchal was diagnosed with hepatitis C nearly 20 years ago. ‘I found that out that I got hepatitis C through the regular transfusions and so did some of the other patients fighting against hemophilia. The problem was that plasma doesn’t heal the body the same way the drugs which are available now can,’ he said. A patient’s transfusions requirements are unpredictable, as they need at least 50,000 units of plasma every year that can cost up to Rs 7.5 lakhs. Here’s what you need to know about the treatment of hemophilia.
Other than that, he says living with hemophilia means constantly compromising on your goals and dreams. ‘I was always a good student, but despite that I couldn’t opt for science as it involves a lot of legwork and long hours in college. So instead, I had to study commerce and take up a sedentary lifestyle so my health doesn’t get affected. Living with hemophilia is like living with a disability,’ says Panchal, who works as a chartered accountant. He juggles his job along with advocating for the rights of patients living with hemophilia in India.
While treatment for the disease is very expensive, Panchal filed a petition in 2011 demanding free medicines for hemophilia patients in Maharashtra. Today, patients can avail free medicines in certain centers across the state, however, despite that positive move, he admits that the availability of the drugs is still an issue. States such as Delhi and Uttar Pradesh also provide hemophilia treatment free of cost. These are the 5 interesting facts about hemophilia you didn’t know.
The challenges
One of the biggest problems faced by hemophilia patients is trying to get a job of their choice. Many organizations are hesitant about hiring people living with hemophilia because of which they tend to miss out on many opportunities to move ahead in their career. ‘Over the years, I have had to hide the fact that I have hemophilia from a few employers. I would disclose my condition only if I knew my employer personally because of the fear that they wouldn’t hire me otherwise. Hemophilia patients should be given support and equal opportunities by corporates as living with this disease is the same as being a disabled person,’ he says.
As of now, there is a pending bill in the Lok Sabha for adding hemophilia and thalassemia patients to the disabled category so they can also be eligible for reservations and jobs. ‘Once we have the rights, we can also gain access to meaningful employment,’ adds Panchal. This is because hemophilia has high disability rates can have a negative impact on a patient’s productivity and also the ability to have a successful career
In a study that included a sample of 148 patients with severe hemophilia, physical disability was present in 79 and 68% patients who were between the ages 13–24 years, respectively [1]. These high disability rates have a severe negative impact on productivity and the patient’s ability to have a successful job or career. In fact, the HFI has been trying for more than two decades for the inclusion of hemophilia in the persons with Disabilities Bill. Read: A hemophiliac’s journey to fatherhood.
Image Source: Patient’s own pic
Reference:
[1] Phadke S. Hemophilia Care in India: A Review and Experience from a Tertiary Care Centre in Uttar Pradesh. Indian Journal of Hematology & Blood Transfusion. 2011;27(3):121-126. doi:10.1007/s12288-011-0084-0.
from » News , Health, Health Nes
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