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A Fearless Explorer

LalitSickle Cell Anemia

This film invites viewers into the life of Lalit, a remarkable individual who has faced the challenges of Sickle Cell Anemia for 34 years. Diagnosed at the age of 16 due to lack of awareness, Lalit shares the challenges and complications associated with this genetic blood disorder. Despite the hurdles, Lalit emphasizes the importance of disease management and proper awareness. His advocacy extends to encouraging testing before marriage to prevent the hereditary transmission of Sickle Cell. The documentary serves as both a personal narrative and a call to action, urging society to better understand and support those living with Sickle Cell Anemia.

Transcript

I have been struggling with Sickle Cell Disease for the past 34 years.

But I have lived well with sickle cell from the time I got to know about this condition.

I was diagnosed very late because no one knew what Sickle cell was.

I was diagnosed at the age of 16.

In sickle cell disease, the RBC (Red Blood Cell) changes its shape to the shape of a sickle.

Because of that, it starts getting stuck in small capillaries and veins.

RBC (Red Blood Cells) carries oxygen but because of it getting stuck in a particular part, oxygen is unable to pass.

Because of this necrosis takes place in that part, and one experiences pain.

This is a hereditary problem that we get from our parents.

It is of 2 types.

One is Sickle Cell Carrier (SCC) and the other is Sickle Cell Disease (SCD)

Sickle Cell Carriers (SCC) is when the parents are carriers.

So, there are chances that the child can have sickle cell disease.

Sickle Cell Disease has many challenges.

One of them is severe pain.

I have borne this pain.

Up till the age of 16, I did not know I had sickle cell.

I kept thinking about why I was facing so much pain.

Why do I get ill so frequently, even though my parents take me to the hospital and I take medicine regularly?

When I was in class 12th, I had a lot of problems.

My HB level went below 4 and I went to an unconscious level.

My parents took me to Apollo Hospital.

I got diagnosed there when it was very severe that I had sickle cell.

In class 12th, at the age of 16, I first heard what sickle cell was.

From that day to now…From 2005 to 2011, I had a lot of pain crises.

My transfusion has also been done because I was not aware.

I have a lot of pain and other problems like AVN (Avascular Necrosis) which has taken place in my hips because of this.

My hip is going to be replaced in some time.

I have AVN on my shoulder.

I also have gallbladder stones.

So, these complications are there because of Sickle Cell Disease.

I keep these complications aside and live my life fully with this.

This is not curable but it is manageable.

If you manage it properly

For this, there is a hydroxyurea tablet.

You have to take it throughout your life with supportive treatment.

These days the Indian government, as I had told you, has launched a program for eradication by 2047.

In many places they will provide medicines and screenings will also take place.

So, it will be possible to manage Sickle Cell Disease and live.

The main symptoms of Sickle Cell Disease are yellowing of eyes and the body, recurrent fever and infections and especially the chronic and continual pain.

Because of having many symptoms, many doctors were not able to identify them.

In the last few years awareness has gone up.

Recently the Indian government has launched Sickle Cell Mission 2047 Screenings will take place from the age of 0 to 40 due to this.

Many patients will be found.

Mostly the patients are from tribal communities and many things are not able to reach there.

This is an invisible disability.

If you see me, you will think I am normal.

When I got married, I got my wife tested.

I don't want any new family member to be like me, a Sickle Cell Disease patient.

I urge you all to get a blood test before marriage.

Everyone should know their genotype.

So that it does not spread at the community level.

It is a genetic problem.

It cannot be seen.

It is not infectious also.

Before I got diagnosed I used to play cricket.

My hobby is travelling

Although I still travel, I have stopped playing cricket because my spleen is large and I might get hurt by the ball.

If I get hurt with the wall then it will be a problem.

That's why I have stopped playing cricket but I still travel.

I take care of myself.

We can manage ourselves.

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