World Haemophilia Day: Here’s everything you should know about this rare disorder
Haemophilia is a condition in which the blood doesn’t clot normally. Medicines for it are not available in India and are imported, which makes them very expensive. There is also an acute shortage of trained haemophilia doctors and nurses.Updated: Apr 17, 2017 11:51 IST
Haemophilia is a lifelong and incurable disorder that can only be managed by use of certain medicines called Anti Hemophilia Factors (AHFs).
These medicines are not manufactured in India, are very expensive and imported from developed countries like USA, Germany and Canada. Hence, medicines are often inadequate or unavailable in almost all the hospitals that leads to deterioration in condition of people living with the condition.
The government can help by making medicines available at all times and address the shortage of trained haemophilia doctors and nurses in government hospitals, say those working in the field of haemophilia patient care.
There is also a shortage of coagulation laboratories in the country.
Vikash Goyal, president Haemophilia Federation (India), says, “We have tried our level best to involve as many stakeholders as possible so that we all work as a team to take our movement forward that is care and solace for people living with haemophilia.”
“We are advancing the need of developing these, at least 1 Haemophilia Comprehensive Centre in every state as well as 1 HaemophiliaTreatment Centre in every district. HFI has been raising the problems the Haemophilia Community faces for the past 34 years,” he said.
“So far it [the government] has identified over 19,000 children and persons with haemophilia, but in reality this figure should be closer to 1.2 lakh considering the population of India. The identification and diagnosis of the remaining sufferers can only be possible if there are enough trained haemophilia doctors and testing facilities,” Goyal added.
On World Haemophilia Day, Union health minister JP Nadda tweeted:
Advocacy groups are working with the ministry of health. Last year, the condition was included in the Disabilities Act 2016 and Flexi Pool Fund of the governemnt of India’s National Health Mission.
The health ministry has also set up 198 Blood Separation Units across the country to derive AHF-VIII from Plasma component that these patients require.
Know about Haemophila
Haemophilia is a rare disorder in which the blood doesn’t clot normally because it lacks sufficient blood-clotting proteins (clotting factors). A person with haemophilia may bleed for a longer time after an injury.
Small cuts usually aren’t much of a problem. The greater health concern is deep bleeding inside an affected person’s body, especially in your knees, ankles and elbows. That internal bleeding can damage your organs and tissues, and may be life-threatening.
How does one get the condition?
Haemophilia is a genetic disorder.
Is there a cure?
There’s no cure yet. But with proper treatment and self-care, most people with haemophilia can maintain an active, productive lifestyle.
Signs and symptoms
* Unexplained and excessive bleeding from cuts or injuries, or after surgery or dental work
* Many large or deep bruises
* Unusual bleeding after vaccinations
* Pain, swelling or tightness in joints
* Blood in urine or stool
* Nosebleeds without a known cause
* In infants, unexplained irritability
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First Published: Apr 17, 2017 11:43 IST