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. “Must get associated with nearest Chapter and gather as much knowledge as possible because ‘Knowledge is power’. The only way is to gain more knowledge is by exchange of ideas.”
Q. Where should the parents go to know their rights and responsibilities?
A. “Visit the nearest Hemophilia chapter. Every chapter has a good collection of education materials on Hemophilia. Internet is a great source of information. Books like “Living with Hemophilia” by Peter Jones and “Raising a child with Hemophilia” by Laureen A. Kelley are excellent material.”
Q. What are the best ways of treatment and management of this bleeding disorder?
A. “Golden words are ‘don’t neglect’, ‘treat early’. Early use of factors prevents long term disabilities. The only question is affordability. Fortunately, due to the tireless efforts of HFI and its chapters, many states have made factors available at a subsidized rate or even free. Physiotherapy is very important to prevent permanent deformities.”
Q. Will there be an increase in no. of CwH (Children with Hemophilia)?
A. “Of course, yes! As the population increases, number of CwH increases. Life span of PwH is also increasing because of improved treatment facilities. But, if we can implement proper carrier detection and prenatal diagnosis we can reduce 70% of cases of Hemophilia!”
Q. Will Hemophilia be treated more effectively and safely in future?
A. Hopefully, yes! Now, with the use of advanced viral inactivation techniques for plasma derived products and widespread use of recombinant products, risk of transmission of infection is very low. Factors with longer shelf life will soon be a reality. Factors may become cheaper in the future as cloning and stem cell technology advances. Factor that can be taken orally may also be a reality in the future.
Q. What are the advances in medical science for a long-term cure for Hemophilia or can it be ever cured?
A. “I firmly believe that one day Hemophilia could be cured permanently and that day I believe is not far away. Gene therapy has already become successful. Human trials are in their advanced stages. But the question I ask to children and youth with Hemophilia (and to myself!) is, do you want to sit back and wait for somebody to come and give you gene therapy or do you want to actively participate and do research and invent gene therapy for yourself and others?”