Skip to main content

Speak out and create change for all!

Hi! I am Preeta, mother of a soon to be 9 year old, a very smart boy with severe Hemophilia A and inhibitors. We are Indians but presently residing in Bahrain. Our journey with hemophilia started 7 years back. The journey has been challenging and bumpy so far but fighting it out day by day.

We all know that how much we have achieved today in the field of treatment for hemophilia, with such wide range of products for both Hemophilia A and B but risk of development of inhibitors is still there in the same range with all these products. The treatment option for inhibitors is still the same from all these years with no 100% or sure shot results. It is high time now to show more serious interest and action in the developments for the treatment of inhibitors.

We all know that present available treatment for any bleeding disorder is not easily accessible to all across the world. Basically 75% of the world with hemophilia are leading difficult life because of very little or no treatment due unaffordability. My son belongs to this group. Everyday is a challenge for us  - physically,mentally, socially and financially because the treatment is beyond our reach. We dont have any hemophilia family or patient support group/system here. Life is difficult especially for our son. He is a very bright child but due to frequent joint bleeds, he is not able to lead a regular normal life. Yes, exercise or being active is very important for a person with hemophilia to keep their muscles and joints healthy but without proper treatment, it is very difficult to get out of the vicious cycle of bleeds.

Today when there is availabilty of treatment  then the priority should be PREVENTION but this is limited to only few, rest of the world is still living with RICE (rest, ice, compression and elevation)tecnique.

I feel that affordable treatment should be the top most priority today and it should be made available to all, no matter which country you belong to or no matter if you are an expatriate in some other country. Manufacturers have a very big role in making things better. They should seriously think about the rest of 75% of the world with hemophilia too and try to reduce the price so that it becomes easily available/accessible to all. Otherwise words such as SUFFERING, PAIN, DISABILITY and AMPUTATION will become synonym to HEMOPHILIA.

Labels

Labels:

Comments

Post a Comment

Popular posts from this blog

An everyday hero......real life, real strength, real courage, real story!

Last year I met a wonderful lady, an amazing mother, a wife and I know many other roles that were hidden inside her.   I was waiting with my son and husband in the Haematology Dept. of CMC Hospital Vellore, that was May 2014. I saw a very simple and pretty young lady, skinny, well groomed in a very simple but pefectly pinned and draped saree. She was talking in hindi(manageable)to the hemophilia coordinator n was finding difficulty in conveying things to him. I could see that she didn't know English either, so I stepped in to help her out. After that we introduced ourselves. She told me that she came all the way from North east of India for her son's treatment and had spent already a month over there. That day nothing more than that we spoke to each other as we both had our appointments n engagements and moreover I was in a different state of mind as we had gone their for our son's checkup. We were there in the hospital for few days so we passed each other 2-3 times...
2 comments
Read more

Treatment Available! But not in the reach of common man in India

Genetic disorders are rare conditions that are given a low public health priority in India , even though these account for significant suffering of patients and their family members. There is no insurance and no free or affordable treatment! India is the second most populous country with almost 1.2 billion people in the world but the numbers of PWH (people with hemophilia) on paper/registered are very few i.e.16000 approximately. Incidence of hemophilia is 1 in 10,000. So a small calculation would give you the idea of number of PWH undiagnosed yet in India i.e. 1,00,000 approximately. That’s a huge number! India is among one of the lowest using AHF countries. The extremely low per capita use of treatment product, despite having the second or third largest number of global patients with haemophilia A, illustrates the large treatment gap that exists in the country. Due to lack of awareness many PWH don’t even know what exactly they are suffering from and are treated for something e...
Post a Comment
Read more

World Hemophilia Day,17th April 2015

Post a Comment
Read more