Get-hooked April 21, 2019
Road to getting disability certificates filled with barriers for hemophilia patients
The Rights of Persons with Disabilities (RPWD) Act, 2016 lists hemophilia among the 21 disabilities, thereby guaranteeing people with hemophilia with benefits and welfare schemes for people with disabilities.
However, people with hemophilia are facing a major hurdle in getting a disability certificate that allows them to avail of these benefits.
Anuradha Sambre, of the Haemophilia Society of Nagpur, Maharashtra has seen hundreds of patients missing out on their rightful benefits due to the lack of disability certificates.
Many a times people with hemophilia do not have any apparent sign of disability. In most cases parents apply for certificates for their small children but are denied for lack of any clear symptoms. Hemophilia can worsen over time and physical deformity can come in later years. Doctors need to understand this and help the children get their right by issuing the certificates. – Anuradha Sambre, Haemophilia Society of Nagpur
Hemophilia is a genetic disorder of the blood that hampers the normal clotting process and results in excessive bleeding internally or from external cuts and injuries. The body of a person with hemophilia is not able to produce the anti-hemophilic factor (AHF) in the required quantity. AHF is required for the proper clotting of blood.
Joint pain, weakness, loss of blood, easy bruising, high risk of internal bleeding are some symptoms. The severity of hemophilia may range from mild to severe and result in deformity in joints overtime.
Since there is no known cure for this disorder, people affected by it try and live by coping with its symptoms. Medications and treatments can provide some relief.
Rajesh Janbade, member of the Hemophilia Supporting Group in Nagpur, says lack of awareness among doctors is an issue too.
“Many a times, the doctors are not properly trained and are not able to assess the condition of patients. It would be better for the patients if doctors are given proper training and information about the health issues faced by people with hemophilia. People with hemophilia and their families are already facing stress due to the physical and mental effects of the disorder, and apathy of the authorities tends to make the condition worse”, he adds
To spread awareness about the challenges faced by people with hemophilia, an event is being held in Nagpur today. Doctors and government representatives have been invited to share information about how hemophilia affects lives of people and families.
Authorities need to realize that not only a visible physical deformity or disability is necessary for disability certification. There are many invisible disabilities, about which greater awareness needs to be created.