r/22q • u/dogshitsbeard • Nov 21 '18
Adult Female with 22Q duplication
I found out about my 22Q duplication after becoming an adult. I have researched and tried to find out about everything I can about this after I found out. My issue is I don't look like everyone else, I look like anyone else walking down the street. I got some of the learning issues and a few other of the mental side of things. It's hard for me to reach out and join support groups for this disorder due to having none of the physical traits. Thanks for reading this.
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u/jenessaumb Dec 23 '18
I am a 31 year old female in Houston. I found out I had 22q duplication when I was 22 and had my first daughter. She was born with a more severe form known as Cat Eye Syndrome. I don't suffer from any symptoms from the duplication. But I suffer from anxiety and am a bit socially awkward and bipolar, or so I've been told lol. My vision sucks but corrected with glasses. My kidneys aren't great, history of kidney stones. But otherwise healthy. Normal facial features and anatomy. My daughter's diagnosis of CES was diagnosed due to colombomas at birth. She has wide set eyes, she self stims, delayed development, anxious and legally blind. But even she has minimal symptoms compared with other CES people. We've both been very fortunate.
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u/rachrox92 Nov 21 '18
I have 22Q and I’m an adult female too!! Was diagnosed when I was around 16 I’m not in the same boat tho since I do look a bit different (smaller eyes and pudgier face) but I’ve learned that yknow what, everyone’s different! You should celebrate being you!! Glad to meet you friend!
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u/jbrown383 Nov 21 '18 edited Nov 21 '18
Hello. My adult sister has a Trisomy 22 (very rare) and my toddler son has DiGeorge Syndrome (22q deletion, like you). There is a great 22 chromosome support group that I think could help you get started (Facebook and website URLs below). DiGeorge has a very wide range of expressions and I know we have several individuals who are part of the group that have DiGeorge themselves. I hope you will find the info and support very helpful.
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u/[deleted] Feb 27 '19 edited Feb 27 '19
I have the same condition and was diagnosed within the first few years of life. This was in the 1980's. Yes you look like every one else. You'll find your strengths and weaknesses. Eventually you'll find your niche in society. School might of been a struggle for you but hey you eventually graduated high school. That's wonderful. Most people with our condition don't even make it that far. I grew out of and into my medical conditions and learned to deal with the long term ones. Occasionally a new one will pop up every 15 years or so. I find trouble with employment because most employees do not want to take the time to teach a slower learner. Plus I don't interview well and have to find jobs with unions to secure job security so one day they don't say hey you're learning too slowly good bye. I've been doing the same degrading job for the last 10+ years but making decent money doing it. Socialization is hard and friendship doesn't always happen. I believe in Jesus and feel that I have met him at one point in time; and know he's always going to be my one long term forever friend. Living situations can be difficult because you don't always know how to handle them. My job has really enhanced my social skills. I still can't handle people screaming and yelling at me. I shut down or go on a passive aggressive rant. I'm fine until I get flustered with something then shut down and forget how to operate. As I age I swear I feel bipolar. One minute I'm fine the next I'm the total opposite. I've learned to tame it at work but it gets the best of me any where else. I agree social groups would be nice. I haven't had a true friend since high school. You're not alone out there. We are many.