George Thengummoottil: Dedicating his life to film making & providing information for treatment & solutions for Keratoconus in India

India is a young country. Like our Prime Minister says more than 65% of the youth is under 35. Today’s youth want to do more. They don’t want to work and restrict themselves in silos. They want to come out and do something for others. They want to travel the untraveled path. Stories of youngsters who are doing exceptional things are really inspiring.

Today we are covering story of young and dynamic George Thengummoottil who is not only achieving his dreams against all odds but doing something which is really inspiring. Here’s our full interview with George.

Can you tell our readers something about yourself

My name is George Thengummoottil aged 31, from a village called Kanirappally in Kerala.  From my young days, I wanted to become a filmmaker.

During my teenage, I was diagnosed for a rare eye disorder called Keratoconus, a degenerative eye disorder, where the thickness of cornea is reduced and its curvature changes from spherical to conical a shape. This gave an extremely distorted vision and made it difficult or impossible for me to do my daily activities, like walking or walking or eating or even reading a book. Life became near to impossible and the medical solutions available was very limited. 

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Due to the very irregular shape of cornea, spectacles could not give any vision. I was in a stage where I had to drop my regular studies and forget what I wanted to do in my life.  A few years after that, a special kind of contact lens called RGP or Rigid Gas Permeable contact lens became available in the market. These lenses could give substantial vision at the cost of a very dis-comfortable eye. This hard lens forcefully reshapes the cornea to gain a spherical shape and was not advised to wear more than 8 hours a day. During my school and college days, when I had to work than 8 hours, I used to make each eye work in shifts. I would wear lens in one eye during the first half of the day and in the other eye during the rest of the day: which was extremely stressing the eyes, but I had no other option. Even a tiny speck of dust in eye could injure the cornea leading to allergy and infection: by which I have lost several months.

As the disease progressed, the cornea thinned further, tearing its membranes, leading to a stage called Corneal hydrops: which further decreased my vision with a white cloud inside the cornea. I thought I will never be able to live a normal life again. I lost all my hope in life and all I could imagine was my dreams burning in wild fire. Most of my teachers and friends lost hope about my life: and I become worried every day how to live in this super competitive world.

As technology improved a few years ago, I am so lucky to do eye transplant and recover a livable vision to one of my eyes. Now since I am able to do most of my daily activities with one eye and lead a happy life.

What is the initiative you have taken?

I have started an organization called Keratoconus Foundation India, a nonprofit trust to help Keratoconus patients in India.

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We guide keratoconus patients about how to live with keratoconus and council them to understand their problems and give advices. We also try to make their family and friends understand about the disease and how it affects ones vision, and how a keratoconus patient must be taken care.  

What exactly have you done so far?

To start with we have a website and groups in facebook, providing information about the treatments and solutions for keratoconus in India.  With my friend Aswath Nayak Puncha, we have started a group in whatsapp, where keratoconus patients discuss about their problems and find solutions for it. We also provide regular updates about the advancements in treatment for keratoconus.

What is the main reason which motivated you to do this extraordinary work?

My reason to go out and travel was depression and the strong drive by my childhood dreams. My dreams helped me a lot, like… I want to do it no matter what. I have only one life and I must make the best out of it.

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Traveling to high altitude is not advised with Keratoconus or after corneal transplant. The thin air, low air pressure and lack of oxygen can easily lead to complications like swelling of cornea, infection or rejection of corneal graft.

But I did not want any of these reasons to stop my dreams of going to high altitude. With only one partly visible eye, I could successfully do one of the most difficult treks in India: and I feel I could get over my fear and a lot of worries in life.

Every step during the trek was difficult as using a single eye cannot give our brain a three dimensional vision, and we cannot sense the distance easily. Over many years I have trained my brain and body movements to cope up with this limitation.

What are your future plans to take this forward?

I want to motivate Keratoconus patients across the world to come out and be happy about their life and be successful.

Connect keratoconus patients with other keratoconus patients in their neighborhood: so that they never feel lonely or alone. I want to make the world aware about the disease, so that everyone knows about the disease. During the initial stage, many keratoconus patients gets diagnosed for short-sight and never do the treatment for keratoconus; with the present medical advancement, it’s progression if stoppable if diagnosed and treated at its very early stage. So awareness about the disease among the public is very important so that they do the right treatment at the right time.

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Join together as a team to find the origin of keratoconus: which is yet to be found by medical science: we have already started a survey to find similarities about the childhood lifestyle of keratoconus patients.

In future, we plan to provide financial aid to treatment of keratoconus, as many of the patients come from economically weak background and cannot afford the expensive treatments.

One life lesson you would like to share with our readers.

Never think about what we don’t have, think about how we can use our limited resources and lead a happy and better life. Never compare with what others have more than us.

Live in the moment and enjoy the present and always dream about what we want to do in our life no matter how contradictory, the situation is.

Be happy about every moment of life: our life is very short. When we have a problem, we should never waste time to think how badly its affecting our life: think about alternatives and think about solutions: no-matter how risky and difficult they are. When I had to do my eye transplant, 8 out of 10 doctors advised me, never do a surgery: which was one reason of progression of my disease to the worst stage. But now I am happy that I was confident enough to take the right decision to do all the surgery.

What happened in the past should never let us down, be with people who loves you and who will stand for you. The best medicine for our mind is to fill with experiences of the most beautiful places in this world: meditate with nature and feel the beauty around us.

Work hard against all the odds and we will be successful in our life.

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