Rare disease chose me but I choose Living Hope

The story of Kimboineng Kipgen

Hi, I’m Kim from Manipur, India.
Growing up I was sensitive to sunlight and camera flash light. At the same time I had quite low vision so used to visit opthomologists from time to time. Used to share the discomforts I faced but it wasn’t taken seriously or more like into consideration as it was a matter of only me experiencing such kind of discomforts back then.
Moreso i grew up together with skin allergies .
Last year post Diwali my skins became worst from bad. Followed by my eyes . It used to be red, very itchy , inflammation were there too.
I consulted Centre for Sight Dwarka, New Delhi (leading eye care provider in the Country) .
I was diagnosed with Subepithelial Corneal Infiltrates and was told if proper care and attention is not given i would lose my eye sight permanently. Was advice subtropical drugs.
Inspite of being under treatment there was no improvement to an extent that on Christmas Eve day i woke up with heavy pain in my eyes and within the next few hour i couldn’t completly see anything. I was given drugs and my eyes were patched.
Later after 48 hours,my eyes became concious again.
After this incident, i consulted Dr. Rajendra Prasad Center for Opthomologists. Narrated my
past history to the doctor.
That was the first time I was medically diagnosed with Severe Photophobia due to severe eye dryness.
And after careful eye examining by the doctors there, i was diagnosed with Keratinization of Lid Margin with some other eye related problems . Medicines and treatments were changed however my eyes
are detoriating day by day hence lady week I was further referred to the Chief of Corneal (who is also the Head of Department in Dr. RP Centre) .
Apparently I’m on steroids in addition to the eye drops and gels. And with my kala chasma (black spectacle in Hindi) 24*7.
There are time I cannot completely see for a day or two.
Eyes patched for day and night for two three days in a row.
At times I just spent my life in a dark room because that’s the only solution i have.
Cannot go out as before, cannot make my favorite recipe in the kitchen because flame does me no good .
Have been told I would become permanently blind in few years times if not too quickly that i would spent the rest of my life in dark and so many other things.
Despite of all these, i have a Hope, a Hope that is not a false hope. But a Hope from the Living Christ . I belive in the
Power of Prayer. I belive in the prayers of my family, friends, church mates and my well-wishers .