"The only thing which makes helping others better is to partner with others."

mpazhayannur

Living with Hemophilia

May 14, 2015, 11:05 AM

My name is Murali Pazhayannur and I work at the penthouse level in the Wheaton office. Many of you know my car better than me as you walk past it as you enter the building from the parking garage. I was born in India and came to the US when I was 29 years old. I have hemophilia. Hemophilia is a rare inherited disorder where the blood lacks proteins that help in clotting. An injury, external or internal (in joints, muscle), leads to bleeding. Such uncontrolled bleeds eventually ends up destroying the joint, affecting its range of motion and eventually various forms of disability or even death. Hemophilia has no cure today. It can be controlled by injecting the missing clotting factor "Factor" intravenously. Factor was not available to me in India. I am living with its consequences now. I have received the best care for my condition ever since I came to the U.S.

My wife and I visited India last October. It was the Indian Holiday season and a fun time to be back in my native country. I wondered how, if at all, lives had changed for hemophiliacs in India. Prior to this visit I had established contact with the hemophilia chapter leaders in Bangalore. I had wanted to meet with patients and families; doctors, nurses and physical therapists treating the patients. And I did. I recorded several interviews with these groups and learnt a lot. In addition, I had the opportunity to address the community in two major Indian cities. Treatment for hemophilia lags far behind that in the US. Every aspect of hemophilia care- from diagnosis, Factor supply and availability, trained medical staff, hospitals- is still affected. The limited Factor available now is not affordable by the masses. The cost of one dose of Factor is frequently a family's average monthly income.  Insurance does not cover Factor costs under the 'pre-existing condition' clause. The problems do not end here. There is a social stigma about having 'hemophilia'. Teenagers are afraid to date; adults remain unmarried. They do not reveal their condition for fear of being sidelined in a job or even socially.

I realized how fortunate and blessed I was to have the best care now. I have always wanted to give back to this community and have spoken at several regional and national events in the US about living with Hemophilia. My India trip was a true sensitizer to the global needs in this area. I would like to raise the general awareness of this disorder among my co-workers. I am encouraging social service organizations to raise funds to support education, mass awareness, better diagnosis and treatment for hemophilia in India. I am reaching out to Pharmaceuticals here to increase Factor supply in India. It's my personal goal to share my experiences and improve the day-to-day life of individuals with Hemophilia.