In spite of progress in the medical technologies for the treatment of hemophilia, health specialists trust that about 80 percent of Indians with the serious blood issue are not analyzed because of the nonappearance of appropriate diagnostic facilities in the remote regions.
India, with almost 200,000 cases, is assessed to have the second most astounding number of patients with hemophilia, a lifelong bleeding disorder that keeps blood from clotting, doctors said in front of the World Hemophilia day April 17.
As indicated by Hemophilia Foundation of India, the umbrella body for registration of the patient with the disorder, the reason for hemophilia is the failure of the body to deliver the anti-hemophilic factor (AHF) in the required amount.
There is no known solution for this issue.
If not analyzed early, the continued seeping into joints, bones, muscles may prompt synovitis, arthritis and perpetual joint deformations.
The bleeding itself can prompt wasting and atrophy of muscles.
For a situation study from New Delhi-based Sir Ganga Ram Hospital, Nasir Khan, a painter by profession, became acquainted with about hemophilia when his multi year-old child hurt himself and began bleeding abundantly 10 years prior.
Notwithstanding, he disregarded his condition that throughout the years wound up extreme and caused a permanent joint handicap.
Dr Ruby Reshi, head of the pathology department at Government Medical College in Srinagar, Jammu and Kashmir, said India is quick advancing in the field of hemophilia treatment yet the core issue is of analysis.
“With only 20,000 registered patients for hemophilia in the country, there is a huge gap as the total number of people with the genetic disorder is not less than 2,00,000.
“There is a need for diagnostic centres that can help first of all in diagnosis and later make people aware about the seriousness of the health disorder,” Reshi told PTI.
“Currently only about 20,000 patients are registered with Hemophilia Federation of India while over 150,000 are still not brought under the registry until diagnosed. Over 80 per cent are undiagnosed. This needs to be bridged,” said Dr Nita Radhakrishnan, assistant professor at Noida-based Super Speciality Pediatric Hospital
Doctors stated, however the government has done what’s necessary under the National Health Mission for hemophilia, proper diagnostic centers have not come up in remote belts of the nation.
Hemophilia is usually acquired and around one in each 5,000 guys is born with the disorder.
It can’t be gotten or transmitted with the exception of through inheritance however can once in a while happen when there is no family history of hemophilia.
Around 33% of new cases are brought about by a new mutation of the gene in the mother or the child. In these cases, there is no past history of hemophilia in the family.
Ladies who have the hemophilia gene are called bearers, and they can pass it on to their kids.
Dr Rajesh Kashyap, associate professor of the hematology department at Sanjay Gandhi Postgraduate Institute of Medical Sciences in Lucknow, Uttar Pradesh, said that just extending the net of diagnostic labs in the districts of the nation can take care of the issue of hemophilia.
“Until the diagnostic net is expanded, neither hemophilia nor gravity of the problem can be known,” Kashyap told PTI.
Expressing the tests for diagnosing hemophilia are not costly and should be possible at district hospitals, Kashyap clarified that there are two sorts of tests – Activated Partial Thromboplastin Time (APTT) Test and Prothrombin Time (PT) Test.
“The PT and APTT screenings are blood tests that show if the blood is clotting properly. Currently the only challenge is about screening which has a huge gap in the rural parts of India,” he said.
Radhakrishnan said that treatment of hemophilia has undergone a lot of change in the last one decade.
“Earlier there was a situation when the patient went without medicines and would go for physiotherapy and other treatments as remedies.
“Today, though every state has been doing well in terms of ensuring treatment for the patients with hemophilia the major challenge remains diagnosis,” Radhakrishnan said.