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My name is Hannah Schilling. I’m 21 years old live in USA.
I was diagnosed at 4 days old with 22q because of my heart defect. I have had 4 open heart surgeries and I have had 23 heart catheterizations. I have pulmonary hypertension and pulmonary atresia - Tetralogy of Fallot. I have intellectual disabilities, am developmentally delayed, and I have a history of speech delay, It took me 10 years for talking. I also have High Blood pressure, I also have hearing loss. My biggest challenge so far with this diagnosis has been my speech delay and constant ear infections. But 22q has changed my life for the better, because my family has become more aware of issues that arise from nowhere and how to handle these issues when they arise . My family has learned to handle these issues together and make sure all of us are aware of the issues. We have learned things do not get resolved at once. My biggest accomplishment has also been my biggest challenge. I have worked very hard on my speech issues and am much more understandable now. I don't get frustrated when someone cannot understand me and I make sure that I'm understood. I got accepted to my dream college Millersville College and I'm learning how to speak in German. I'm hopeful that the 22q Family Foundation can help to keep me furthering myself. I've worked hard at school and it has taken me longer than usual, but I'm trying to become a responsible and active member of my 22q community. I have really enjoyed that I am not alone and that is comforting.
I have written a book called: How I Deal with 22q. https://smile.amazon.com/How-deal-22q-Hannahs-living/dp/1983007854/ref=sr_1_1?ie=UTF8&qid=1535346026&sr=8-1&keywords=how+i+deal+with+22q
I have YouTube channel called: Living with 22q.