22Q and YOU
22Q Deletion Syndrome
22q.112 Deletion Syndrome is the second most common syndrome in the world (behinds Downs Syndrome). It can affect an individual up to 180 different ways and each individual is affected differently.
*Common traits of 22Q are:
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heart defects
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palate differences
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learning disabilities
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anxiety
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low calcium (causing seizures)
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kidney problems
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growth delay
Find out more at 22q.org
The cause of 22q is a microdeletion on the 22nd chromosome. We all have 23 chromosomes. When a piece is missing, even if it's microscopic, it can have life-altering effects.
Having 22q doesn't define me, God does, however, it is a big part of who I am . You can find my story below.
We knew something wasn't right...
School was always tough for me. I didn't have any problems making friends, but math, money and time were a constant struggle. I had a hard time focusing on what the teacher was saying because she/he would talk so fast. I had to get glasses early in life and I always seemed to be sick. It wasn't until I was in third grade that teachers suggested that my mom arranged for some testing to be done to find out why I was struggling and identify a possible learning disability. The testing was helpful but it didn't give us the real picture as to what was going on.
A simple visit to a doctor for a stomach ache at age 10 finally steered us in the right direction. He noticed something about the way I looked that reminded him of another patient he was treating for "DiGeorge Syndrome" (an original name for 22q). After taking a full medical history he sent us in for a simple blood test that would test for 22q. We got the results in a week.....after visiting so many doctors and having so much testing done over the years, it just took this one guy to look at me and figure it out. Upon getting the diagnosis I had many more tests done to make sure I didn't have undiscovered heart issues, spinal issues, hormone imbalances and more. Feeling blessed I was cleared from all those issues.
How 22q affects me
Yes, I have 22q but it doesn't have me. I suffer from some of the effects of 22q such as anxiety, organizing things can be tough and following a lot of directions at once can frustrate me and I have had my share of stomach problems. As I grow older, I have been noticing a lot more of my struggles and that it's a big part of who I am. Throughout my life I have always had a hard time with school, like learning quickly and understanding math and science. I am thankful that we were able to resolve a lot of my stomach issues by changing my diet to gluten and dairy-free diet. I like to continue to learn and do a lot of reading. Knowing what I struggle with and learning coping strategies helps me be successful in life.
22 facts about me
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I love to encourage people
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I love to spend time outdoors in nature or in the woods
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I love going to christian concerts or regular concerts
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I have an obsession with cute journals
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I love writing and doing you-tube videos
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I have always wanted to be a writer and looked up to christian authors
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I am a family girl
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I went on a trip to the holy land to Egypt, Israel and Jerusalem my dream trip
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I like to do stuff with my friends
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I love reading
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Taylor Swift was my first concert
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I look up to Nick Vuijic
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I love dogs
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My cousin and I started a coffee group for people with invisible disabilities in December 2019
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People always say I look really young but am really 23
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I am probably one of the most honest person you will meet
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I work at a Cafe my dream job
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I was featured in the 'Shine Brightly" magazine through Gems Girls Club Ministry in 2017
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I have an obsession with coffee
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I have ridden a camel in Egypt
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I am gluten-free and dairy-free
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Christmas is my favorite season
