documentary management

documentary management

This is a documentary about hemophiliacs in Nepal/ 3rd world countries.Specifically, This is a story about kids who have this rare bleeding disorder that has no cure and medication for its effect is both expensive and only produced in the developed country.

Deficiency in coagulation factor VIII in the blood cell is the cause of hemophilia A. This is a disorder that can be easily treated. Still, if not treated, it can become deadly.

First, What hemophilia does is make it hard for a wound to heal correctly by not letting the blood clot. No blood clot means blood, not stopping, which can cause excessive internal/external bleeding. Factor recombinant is one sort of medication produced in developed countries, and even here, it cost $23,300 for 1000iu. For reference, it would cost me $68,546 to get my weekly dose of a factor if I had to pay out of my pocket.

I have factor 8 sever deficiency which means, my body only produces  <1% of the element. I have to take factor 8 medication 2x a week to be in the “normal” level.  It cost this much in developed countries, and people are living their normal life even with having hemophilia

But, Being born in a 3rd world country, I didn’t get this kind of medication until my family brought me to the united states. 1 out of 1000 males has hemophilia. If given proper treatment, it has no effects in life, but hemophiliacs who are not living in developed countries are not getting these medications and are suffering and even dying.

Most of my young memories are either bed-bound(being not able to go anywhere cause of the bleed) or at the care center icing my red ball looking ankle. Icing is used to treat minor bleeds for “normal” people, but for hemophiliac, ice was the worse, but the only option to manage their bleed. The longer there is internal bleed in a joint, the more joint degrades. Major arthritis

External bleed. You get a small paper cut, you bleed for a sec or two, but it stops. Me, I get the same size paper cut I bleed much longer as my blood clot quickly.

Internal bleed(deadly). You fall and hit your body. You get some bruises, but you are fine. For me, if I fall my blood clot and cause an internal bleed.

I want this documentary to focus on the kids right now who are suffering from it but have pictures/ videos of my childhood and my friends who have the same bleeding disorder and what has it done to our body.

Xray of my right knee from 2011 shows a degraded bone surface in my knee joint supported by very thin stick looking like a leg bone.

Xray of my NEW titanium knee from 2016 shows me at the at of 17 having gone through a total knee replacement because of major arthritis caused by an untreated bleed.

The primary purpose of this documentary would be to let people know about the bleeding disorder and how hemophiliacs around the world are treating it.

A juxtaposition between 1st world country patience vs. 3rd world country patience.

Here are some of the images showing joint bleeds and hemophilia.

This knee looks like a blocked drain, blocked with a lump of blood.

This one looks like a ball of energy.

This one seems like an inverse of bee’s knees

This knee makes the leg look like a baseball bat.

Now this is a bum knee.