I am Ignacio and This is my Story of Life With Idiopathic Intracraneal Hypertention


When I was four, I started to have headaches. The doctor thought that a pill I was taking to help me concentrate might be the problem. He changed that pill and I became worse. So, I returned to the previous pill and I started to feel better again.

Years passed by and headaches were there sometimes. My parents used to give me a pill and the pain would vanish. Suddenly I started to fall down and broke a few bones. I had lots of tests and the doctor said that it was all because “I didn´t know how to fall down correctly.”

In 2012, in addition to my falls, my headaches worsened. I could not play or study. I had to go several times to the clinic. I had injections and slept. The worst headache of my life occurred when I was in Uruguay.

Back in Lima, I spent almost two months between the clinic and my bed. I had exams and got many medicines that helped me to improve. I had to take lots of medicines. I started to improve a lot, but after some weeks I started to see double, blurry, I could not see very well… but my head was not hurting.

And they found a Papilledema, that means that my eyes were swollen, behind them was lots of blood. In addition, my brain nerves that carry messages to my eyes were paralyzed. Finally, after having lots of tests that scared me and hurt me, they told my parents that I have Idiopathic Intracraneal Hypertension.

Idiopathic Intracraneal Hypertension (IIH) is a rare disease that affects few people around the world. Much more to grown up women. It is not common in children, but it just came to me. I am one in 100,000

My brain thinks and feels it has a tumour, but it is not true. What happens to my brain is that is filled with a liquid that is pressed and makes my head hurt. I feel dizzy, with nausea, and I vomit. Besides my swelling eyes, I have blurred vision, I see fuzzy, and I have crossed eyes.

There are days where my legs or neck hurts, or the entire body. I feel numbness in parts of my body. Sometimes I see lights and clouds in my view, but then I improve and I see well again.

Or I don’t listen well because I feel like a ringing in my ears…so , I am sometimes, lost in others’ conversations. For this reason, I need you to help me to tell other people that there are rare diseases that make it let us look well but inside they are very difficult , hurt and upset too much.

I don’t like to feel different.

Now, I am nine, and I no longer want to have to take so many medical tests and would like to stop taking pills, but I know that if I don’t take them I can go blind at any time. I would like to find a cure for me! When I get bad, my parents suffer a lot. Even if they don’t tell me anything, I realize it.

I wish I could wake up one day without pain, fully recovered. For this reason there is always a hope, and I know we are going to find a cure.

Ignacio

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