What Do I Have to Fear? I've a Great Family and a Support Group

The following story is shared by Imrul Qayes, a member of our keratoconus community on Facebook.

Hi, My name is Imrul Qayes. I am 22 years old. I was first diagnosed with Keratoconus in 2010 when I was 17. I had itchy, red, watery, burning eye problems since I was young. Over the years, I've consulted quite a few doctors but none of them could identify what my problem was. They would prescribe some eye drops which temporarily caused relief but nothing permanent. So, I kept changing doctors.


I also had vision problems. I couldn't see with my right eye, too blurry, and left eye was 6/11 I think. I am not sure. At that time I was such a stupid that I thought it was supposed to be like that. I thought everyone sees with one eye and what I see with my one 'good' eye was normal. When I was 15, one doctor checked my vision and found that I see with only one eye and that one's not too good either. Of course, he couldn't correct my vision with glasses. I kept changing doctors.

When I was 17, finally one doctor suspected KC and referred me to another doctor. That referred new doctor performed a couple of tests and confirmed that I've KC. He explained what it was, what it does.
The only thought in my mind was, "Am I going to be blind?". And I hated that thought more than anything.
When I first heard about it,to be honest, I was terrified. At that time, I knew I can't see with my right eye and what I do see with my left eye was degraded, maybe half that of a normal vision. And I thought, yeah that's it, doesn't matter, many has more serious problems. Then came this blow in the head. My doctor told me that this is a progressive disease. It will further degrade my only 'good' eye. The only thought in my mind was, "Am I going to be blind?". And I hated that thought more than anything.

I have other physical problems. My right ear is blocked. So, basically I see with my left eye and hear with my left ear. Moreover, I have a disease named Keratoconus which happens to be progressive. I used to ask myself, " Yeah, no shit. Why don't I have others problems?". Then I used to answer myself, "You moron, how do you know you don't have any other problems? Maybe your right kidney is damaged, who knows". I felt like I was a defected product. Whenever I got some physical problem, I thought it was a birth defect or some serious disease. Even if it was just a simple fever.

My doctor told me I need cornea transplant for my right eye and have to use contact lens for my left eye. He then tried to fit me rgp lenses. I still remember the first time I put the lens on. To me, it was extraordinary. Before that I never knew what normal vision looked like. Unfortunately, it was a poor fit. I couldn't put it on for long. He knew about KC but wasn't much experienced about the disease. Then once again I started changing doctors. This time at least I knew what disease I had.

The problem with KC is that very few doctors are aware of it. I found another doctor with different suggestions. Then I went to India in 2011, neighbor country. There I first learnt about cross-linking. At that time, I knew little about KC. I have suggestions from 3 different doctors and all of them are different.
Misinformation can be more dangerous than no information.
Misinformation can be more dangerous than no information. I thought I didn't know about cross-linking and that doctor wasn't much of a sharing type. I had only one good eye, well sort of, and they are gonna operate on that eye. They are not even gonna provide any assurance. What if something goes wrong? Being blind is not something I could take. I would rather put a gun on my head and shoot myself. So I decided not to have cross-linking.

I came back to my country, kept in touch with the last doctor I consulted. I had no confidence on him but what more can I do? In the meantime, My vision degraded further. I visited my doctor who told me it was stable. I also have frequent headache problems. Often, I feel pressure around my skull. I feel like I am dazed. I can't think clearly in that time. I can't remember details during that period. So, I thought it must be my imagination, my vision is same.

People don't really understand KC. They don't really feel our pain, they don't know what we've to endure. They think we're faking it. They think it can't possibly that worse. Only a KC patient knows what it's really like. I'm not comfortable with people. I don't usually tell that I've KC not even to my close friends, what's the point? I don't even look anyone in the eye, I fear they'll realize I've a damaged eye. Due to degraded vision I faced many problems now and then. I couldn't handle them properly. I got emotionally disturbed now and then. Time went on.

I found a support group in facebook. I learnt a lot about keratoconus there. To see other patients like me, it's somewhat comforting. At least I'm not alone. I found another patient from my country. I contacted him. He was very kind to me. He shared many valuable information. He told me about his doctor, suggested I should consult him. I will be forever grateful for that.

I consulted this new doctor. He suggested that I should've cross-linking. This time, I tried to research about it, posted a few posts in the support group. They provided information, support. I'll have to thank them too. My family searched for options,more information.

Finally after some time I decided to undergo cross-linking. I had it done in January 31,2015 under this new doctor. 2 months after the operation, he fitted me with RGP contact lens. This time it fitted. At first there was some problems, but with time it dissolved. Now, I can't move without it. When I take off the lens, I feel like I'm blind. It has become a part of my life now. I still can't see with my right eye but I'm happy. I'm now much much better than before. I'm scheduled to undergo a RGP trial for my right eye soon. I'm hopeful. If it goes wrong, I'll consider other options.

I'm not afraid anymore. I've a great family, I've a support group, I know there are others like me. What do I have to fear? There's hope.

3 comments:

  1. if u don't mind, can you please inbx me. ?

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  2. This comment has been removed by the author.

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  3. You describe very well the natural history of keratoconus patients. Today we can treat patients like you in early stages of the disease (cross-linking) and in the most of them, avoid the corneal transplant. Is very important to tell stories as you did, to inform how things can improve with the proper management.

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