Legally Blind With X-Linked Retinitis Pigmentosa

The day after Christmas 2018 I started experiencing flashes of light in my peripheral and I instantly knew something was wrong, I made an appointment with an eye specialist the first week of January 2019.

“You have Retinitis Pigmentosa.” That’s what I was diagnosed with, X-Linked RP, a rare hereditary blinding eye disease with no cure.

I’m going blind.

My whole life I always knew what X-Linked Retinitis Pigmentosa was. The men in my family would be affected and the females would be carriers of the blinding eye disease.

I grew up with a completely blind grandfather and I saw the many struggles he faced during his life being a blind person of XLRP, my mother is a carrier and that meant I had a 50% chance of being a carrier myself.

When I was 18, I noticed it was getting harder for me to see at night, but since I’ve been wearing glasses since the age of 3, I just brushed it off thinking it was just bad eyesight. By the time I turned 23 I could no longer drive at night and it became more difficult to see when someone would try to hand me something. I also became more clumsy by tripping over things on the floor and I started tripping over curbs and steps, I was getting blind spots in my peripheral and night blindness.

I was declared legally blind January 7th, 2020. at the age of 25.

The day I was diagnosed with XLRP, my eye doctor also discovered my optic nerves were swollen (Papilledema) and referred me to a neurologist who confirmed I have a brain disease with no cure, Idiopathic Intracranial Hypertension, which also goes by Pseudotumor Cerebri. It’s a rare brain disease where my brain thinks there’s a tumor when no tumor is present. My neurologist thinks my X-Linked Retinitis Pigmentosa might be the cause of my IIH, but no research has been done because of how rare I am.

More needs to be done for females with X-Linked diseases.