Two sides to a face

chelsey_peat_sturge-weber-syndrome

Chelsey Peat's Story

Canada

Age: 25-36

A little bit about my journey:

My Diagnosis

Sturge Weber Syndrome Glaucoma Type 2 diabetes

Time to Get Diagnosed

A few days at birth

Year I was Diagnosed

1985

Sending Love to

Hospital I'd Recommend

This is my story:

I was born with Sturge-Weber Syndrome, with a large portwine stain birthmark covering the left side of my head and neck. Lots of extra blood vessels resulted in glaucoma and visible differences in my left eye. At 10 months, like many with SWS, I began to have uncontrollable seizures. With all other options tried and failed, at 18 months I was booked for major brain surgery. The surgeons planned on a hemispherectomy, or dislocating half of my brain; but luckily were able to locate the affected area and instead I had a piece of my opcipital lobe removed. Some vision was lost in the process but I’ve been medication and seizure-free since.

Growing up was a struggle, especially in a small town. My nickname from the bullies was “Two Face.”Wanting to fit in, I tried all the usual treatments and laser treatments but numbing creams made no difference. These laser treatments were too painful and thick makeup did nothing for my self esteem or my social acceptance. After moving to a small city I began undergoing laser treatments at a hospital that would do them with anaesthetic.

By age 21, I began to question what I was doing. Why did I need to go through the pain, the anaesthetic issues and the aftercare? Why go through all this to make ‘normal’ people like me and accept me? Why hide behind a mask of makeup? My boyfriend (now husband) adored me for me. He saw me for who I was on the inside.

I decided then and there not to seek further treatment nor to hide behind makeup and to this day I live by that. It’s not always easy; I know how I look has impacted my ability to get jobs, to find a close friend, to be accepted socially.

People are naturally curious about my condition, and I welcome the chance to answer their questions. I just ask to be treated with respect, like anyone else. My blessings are my husband, who is my best friend, and my two beautiful daughters who love me unconditionally. I remember taking my oldest to school and her classmates would whisper and point but she would answer their questions as diplomatically as I do.

Recently I’ve begun to connect with other adults with facial differences through instagram and other social media and it’s been incredible hearing their stories and knowing I’m part of a wider community. Now I say that my birthmark was really my first tattoo that fate designed for me.

Let’s play 20 questions:

The song that keeps me going is:
Fight Song-Rachel Platten
I never leave home without my:
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
P!nk
When I need to relax, I:
Sing
My favorite food is:
Chocolate chip mint ice cream
The quote that keeps me going is:
If I let the stares/whispers stop me, I’d never be the inspiration that drives me on those dark days!
When I need a laugh, I:
Spend time with my kids
Meet my pets (or favorite stuffed animal):
My hero is:
When I’m having a down day I binge watch:
Greys Anatomy
My favorite book to get lost in is:
Harry Potter Series
I want to be best friends with:
The thing I’m most proud of:
Raising my daughters
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Having parents of Sturge Weber Syndrome kids reach out and praise me for my journey and support.
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
Acknowledges me
My favorite social media account to follow is:
Vascular Birthmark Awareness Foundation
The advice I would give to myself back at the beginning of this journey would be:
Words of encouragement that I’d give to my fellow warriors are
Stand Strong.
Follow my journey: IG: @chelseypeat and FB: @chelseypeat

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