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An Unyielding Spirit

ChetanHemophilia

Join us for an informative short film on Hemophilia through Chetan’s lived experience. Chetan’s unique journey living with this blood disorder, navigating an unpredictable work schedule, and embracing life with its challenges is quite interesting, to say the least. Plus, it’s our way of sparking awareness about persons with disabilities! Watch the film to become informed and involved!
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Transcript

I work as an editor.

However, in our case, life is unpredictable because we never know when we would start bleeding, in which case, we need to take a leave and face the consequences

Because people are not aware of what Haemophilia is

For e.g., I edit, for me, my elbow is very important and my elbow started bleeding during one project

I worked until 11 pm with a client and the next day there was a presentation at 9 am which I could not attend

“You were fine yesterday, what happened today,” the client questioned

At that time, I understood that he is not aware of what haemophilia is

I felt that it was time to start raising awareness among as many people as possible so that they know what haemophilia is

In our human body, there are 30 protein counts

In a haemophilic, the number 8 protein count is missing, and I have the 8 protein count missing in my blood 

If I ever get hurt or get hit, I would start bleeding, which would not stop so easily

My joints dry up, if I cut my hand my bleeding does not stop

For any other person it would stop, it does not stop for me

For this, I need to take the Factors

These factors are human blood-derived factors, or recombinant factors, for which I have to go to K.E M. Hospital, also known as the Haemophilia treatment centre, to access these factors for my condition 

The factor 8 haemophilia deficiency is called Haemophilia A and the one which has factor 9 deficiency is called Haemophilia B

1 in 5000 In India is known to have Factor 8 deficiency and 1 in 20000 Factor B deficiency B 

Generally, it is not common in girls. If any woman has a history of the same then they can go for Carrier detection center to determine if their child has haemophilia or not 

Earlier medicines used to be very expensive, and still is, making it unaffordable for the normal man

From 2013 under NRHM these factors were provided free from the government centre. However, the frequency was inadequate, as a result we continued to face the problem of bleeding

Because of Haemophilia, from my childhood, during my school years, I used to face numerous problems, like because of frequent bleeding I could not attend school regularly

Also, I couldn’t write my exams, even when I was present, due to frequent elbow bleeds

Further, in my academic years, in my college, I couldn’t attend picnics because I was always worried that if my leg swells and I am unable to walk I will inconvenience people around me, so I avoided attending such events

My schooling was just at my house and on my bed

Even when we seek jobs and employers get to know we are disabled we don’t get a preference 

Because they would think he may have problems repeatedly, then why appoint them? 

We also have problems in our married life 

Generally, due to a lack of awareness, people don’t know how to treat Haemophilia

Haemophilia is like any other disease, like I would say, in diabetes one needs to take insulin, to manage diabetes. Here we have to take Factors to become better

Bye Ma’am Bye 

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