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:

  • heart defects

  • palate differences

  • learning disabilities

  • anxiety

  • low calcium (causing seizures)

  • kidney problems

  • 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
​    
  1. I love to encourage people

  2. I love to spend time outdoors in nature or in the woods

  3. I love going to christian concerts or regular concerts

  4. I have an obsession with cute journals

  5. I love writing and doing you-tube videos

  6. I have always wanted to be a writer and looked up to christian authors

  7. I am a family girl

  8. I went on a trip to the holy land to Egypt, Israel and Jerusalem my dream trip

  9. I like to do stuff with my friends

  10. I love reading

  11. Taylor Swift was my first concert

  12. I look up to Nick Vuijic

  13. I love dogs

  14. My cousin and I started a coffee group for people with invisible disabilities in December 2019

  15. People always say I look really young but am really 23

  16. I am probably one of the most honest person you will meet

  17. I work at a Cafe my dream job

  18. I was featured in the 'Shine Brightly" magazine through Gems Girls Club Ministry in 2017

  19. I have an obsession with coffee

  20. I have ridden a camel in Egypt 

  21. I am gluten-free and dairy-free

  22. Christmas is my favorite season

 

 

I hiked the Narrows at Zion National Park
Dream job as a Barista at Brody Be's Cafe
I visited Egypt on the Heart of God tour

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