World Hemophilia Day celebration in S.Cal voices bleeding disorder

World Hemophilia Day celebration in S.Cal voices bleeding disorder

India Post News Service

The Hemophilia Foundation of Southern California in association with Dr. Akshat Jain, a well-known Indian American hematologist organized the World Hemophilia 2022 celebration in San Bernardino, California on April 16.

The theme of hemophilia care, set by the World Hemophilia federation for 2022, has been chosen as –“Access for All : policy , partnership and progress.” This event was just that.

Dr Jain was the invited speaker where he spoke about the history, present and future of bleeding disorders in children’s and adults. Talking to a sold-out audience at the famous New Delhi Palace, cuisine of India banquet hall, Dr Jain who has treated patients in Asia, Africa and America with blood disorders, shared the advances in the field and stories from his career that spans over the past 15-years and has taken him around the globe.

Hemophilia is a rare disorder in which the blood doesn’t clot in the typical way because it doesn’t have enough blood-clotting proteins (clotting factors) and even a small cut or trivial injury could cost the patient his/her life due to uncontrolled blood loss. Internal bleeding can damage large organs and tissues and be life-threatening.

Hemophilia is a genetic disorder and commonly known as the “disease of the royals,” as Queen Victoria II of England famously carried the hemophilia gene and male members of the royal families in subsequent generations suffered from this severe bleeding disorder spreading the disease to the royals of England, Spain and the Russian Czars.

Bleeding and peanuts: Mentioning a funny but poignant story from the last century Dr Jain said that as recently as 1957, highly prolific researchers were performing experiments with peanut extract to treat severe bleeding. This was not very long ago said Dr Jain, emphasizing the desperation that the patients and doctors treating them faced in the absence of any reliable way to stop life threatening bleeding in these children and adults to prevent severe blood loss, that very often lead to death.

Patient testimonials sent from Asia, Africa and the U.K. ,specially recorded for this event took the audience a journey around the world and showcased the challenge’s and triumphs of fellow bleeders around the world , bringing patients and caregivers from all around the world in one room as a family , thus living up to the theme of Access to All .

The hemophilia foundation and speakers concluded in a unified message that Hemophilia therapy has evolved through hard work by ‘science’& built on suffering of generations of patients that need to be honored and their sacrifice’s revered.

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