Nagpur: On World Hemophilia Day (17th April), healthcare practitioners and caregivers have reiterated the critical need for early diagnosis, access to treatment, and physiotherapy for people with Hemophilia to lead a near-normal life. With easy access to factor replacement therapy and physiotherapy, Hemophilia patients – especially children – can fight this life-threatening blood disorder.
The risk of death from lack of basic knowledge and untreated Hemophilia is very high. They also laid strong emphasis on Government support, to ensure availability of diagnosis facility, factor replacement therapy and physiotherapy at there respective centers. According to Hemophilia Federation (India), there are over 20,000 registered patients with it. However, this number would be much higher, considering the population of India.
Dr Anju Kadu, Consultant pediatrician, Lata Mangeshkar Hospital, Nagpur said that diagnosis and access to treatment plays very crucial role in giving every children a normal childhood and life.
“Proper physiotherapy also plays an important part in ensuring that they remain active and healthy. The society and the government need to join hands to fight this blood disease, which can turn deadly in the absence of proper knowledge about the disease and lack of treatment”, she said.
Dr Kadu added that Haemophilia can be treated with on-demand factory replacement therapy, however prophylactic infusions of clotting factors can prevent abnormal bleeds.
Hemophilia is a life-long medical condition, without access to proper treatment, children frequently miss school and have to always be alert to injuries.
While there are government facilities available for factor replacement therapy and disease identification, lack of awareness and unavailability makes it difficult. However, a few centers in Uttar Pradesh and Gujarat provide personalized prophylaxis – the most optimized care for Hemophilia. On the other hand, what is also urgently needed are trained doctors and government support to extend access to factor replacement therapy at government centers across India.
What is Hemophilia?
Hemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting. People with this diseases do not bleed any faster than normal but can bleed for a longer time. Their blood does not have enough clotting factor. Clotting factor is a protein in blood that controls bleeding. A serious disorder, it puts the patient at risk of death due to excessive bleeding. awareness about the blood disorder and its management can make accessibility of appropriate treatment a reality for patients and save their lives.
The missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot that is bleeding. Bleeding should be treated as quickly as possible. Quick treatment will help reduce pain and damage to the joints, muscles, and organs.