Can hemophilia lead to death?

What is hemophilia?

Hemophilia is an inherited and life-threatening bleeding disorder. Due to the lack of clotting proteins even the slightest cut, the patient’s blood does not clot normally. This disease requires special care or it will lead to recurrent and prolonged bleeding into the joints and muscles sometimes leading to permanent disability, even more severe can lead to death.

Infusion of anticoagulant factors (AHF), seems to be the only rather expensive treatment. (One unit of Factor costs around Rs 10-12. And in any given bleed, a person needs 500 to 2,000 IU in one injection, resulting in an average cost of Rs 5,000. Rs 20,000.)

About Federation of Hemophilia (India)

The Federation of Hemophilia (India) is a non-profit organization working for the benefit of people with hemophilia. hemophilia. They have a network of nearly 90 Chapters spread across the country, aiming to reach more and more people with hemophilia.

The organization also aims to provide quality care, affordable treatment, educational and psychosocial support, and economic recovery. The federation has spoken out about hemophilia for the past 39 years.

World Hemophilia Day

Hemophilia is a rare disorder that often goes unnoticed because of a lack of awareness. Large susceptibility foci are needed to make people aware of this rare genetic disorder. World Hemophilia Day is one of the key initiatives observed globally in 140 countries to stimulate similar activity.

Main concern

  • The medical staff are not aware of this disease.
  • Missing a lot of AHF procurement.
  • AHF is unevenly distributed.
  • There is no good policy on hemophilia at the national and central level.
  • Women can also get hemophilia, but it’s much rarer.

The government is solving the problem

The most important ingredient of human existence is blood. Considering the importance, forecasting and future prevention and proving effective management, Government of India has prepared comprehensive guidelines for prevention and control hemoglobin disease (Thalassaemia, sickle cell anemia and other variant anemia).

Under the National Health Mission, the Government of India provides financial support to Countries to strengthen their healthcare systems, including a blood disorder treatment system with the following tasks.

Vision for the future

  • Secure the infrastructure needed to connect services at different levels of healthcare.
  • Strengthen the guarantee of prenatal screening of children and mothers.
  • Train necessary staff members to participate in the blood disorder treatment program.
  • Provide optimal care for all of our patients thalassemia, sickle cell diseaseand hemophilia by setting up day care facilities for transfusions and infusions, followed up with the help of state health departments.
  • Provide financial assistance to purchase medications such as chelation, AHF, and other needed medications in coordination with the state department of health.
  • Awareness programs on hemoglobinopathies and hemophilia should be organized.
  • A national registry is being created, which will be invaluable and will be an important tool for planning future patient services.
  • The medical fraternity and the doctor must be consciously perceived for the same.

Source: Medindia

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