An Inspiring Story of Professional Growth with Hemophilia

Meet Dr. Sandeep – An Inspiring Story of Professional Growth with Hemophilia

He is living successfully with Severe Hemophilia and did not let Hemophilia dictate terms to him. His article on Hemophilia was recently accepted for publication in the journal of World Federation of
Hemophilia (WFH).
He was born in 1982 in a small town of Karnataka to a small middle class family. At the age of 6 months he was diagnosed as having Severe Hemophilia. As a child with Hemophilia in the pre-factor era he had to undergo whole blood transfusion every time a bleed occurred. Bleeding episodes became frequent with his growing age. Despite all the medical conditions he continued to study hard pursued his dream fully of becoming a doctor to help Hemophilics.

 

His perspective on few Hemophilia Questions

Q: What do you think should be the correct approach by parents when they first discover that their child has Hemophilia?

A: Parents must get associated with the nearest Hemophilia chapter and gather as much knowledge as possible because “knowledge is power.” The best way to gain knowledge is through the exchange of ideas.

Q: Where should parents go to know their rights and responsibilities?

A: They should visit the nearest Hemophilia chapter. Every chapter has a good collection of educational materials on Hemophilia. Additionally, the internet is an excellent resource. Books like “Living with Hemophilia” by Peter Jones and “Raising a Child with Hemophilia” by Laureen A. Kelley are highly recommended.

Q: What are the best ways of treatment and management of this bleeding disorder?

A: The golden rules are: “Don’t neglect” and “Treat early.” Early use of clotting factors can prevent long-term disabilities. While affordability can be a challenge, the efforts of organizations like HFI (Hemophilia Federation India) have ensured that many states provide these factors at subsidized rates or even free of charge. Physiotherapy is also essential to prevent permanent deformities.

Q: Will there be an increase in the number of Children with Hemophilia (CwH)?

A: Of course, yes! As the population increases, the number of CwH will also increase. Moreover, the lifespan of People with Hemophilia (PwH) is improving due to better treatment facilities. However, by implementing proper carrier detection and prenatal diagnosis, we can reduce 70% of Hemophilia cases.

Q: Will Hemophilia be treated more effectively and safely in the future?

A: Hopefully, yes! With advanced viral inactivation techniques for plasma-derived products and the widespread use of recombinant products, the risk of infection transmission is very low. Factors with longer shelf life and even oral forms may soon become a reality, and advancements in cloning and stem cell technology could make treatment more affordable.

Q: What are the advances in medical science for a long-term cure for Hemophilia? Can it ever be cured?

A: I firmly believe that one day Hemophilia will be cured permanently, and that day is not far away. Gene therapy has already shown success, and human trials are in advanced stages. However, I pose this question to children and youth with Hemophilia: Do you want to wait for someone to bring you gene therapy, or do you want to actively participate in research and invent gene therapy for yourself and others?